International Infant and Pregnancy Loss Month, with October 15th the
focal day. This month and day give the many organisations focused on addressing
stillbirth a chance to organise inspiring events, raise funds, and remember 3.2
million precious stillborn babies who die during pregnancy across the globe
This month’s feature article is written by
member Stephanie Fukui and explores the role of bereavement care in Japanese
society. The rest of the newsletter provides the usual information on upcoming
events, international news, and research.
Last month one of ISA’s
regional offices, the Australian New Zealand Stillbirth Alliance (ANZSA),
released its first newsletter which is available on the ANZSA website at www.stillbirthalliance.org.au.
The newsletter has
generated a lot of much welcomed interest in the Australia and New Zealand region.
We are busily organising our next conference to be held
jointly with ISPID October 8-10 in Sydney
Australia. I hope to see you there!
This will be the last newsletter for this year. As
ISA chair, I
would like to thank you sincerely for your support during 2009 and look forward
to working with you all again in 2010.Our next newsletter is due March 2010.
of Bereavement in Japanby Stephanie Fukui
Author’s Note: If my daughter Ema
could have survived, she would be 23 years old on November 6, 2009. As a trisomy 13 baby unable to survive outside the womb, Ema died at
birth in 1986. When my husband and I moved to Japan in 1987 raw, and at
the same time numb from loneliness for our baby,the ancient Rites of Bereavement in Japan guided us through.
Twenty-three years and two big beautiful sons later, I still have a fierce love
for my Ema and such gratitude. Her little birth and death taught me big things
and changed my life path. I am also thankful that I have experienced the
soothing quiet of Japanese temples and shrines and the timeless ceremonies that
helped me towards peace.
Western society has distanced itself from death. Since the
18th century Westerners have moved towards putting all faith into
science. Death has come to be seen as a medical problem, not a spiritual
process. The “medicalization” of death has put pressure on health
professionals. Medical solutions, doctors, hospital staff, and mental health
professionals have taken a place that used to be reserved for the priest and
the family’s faith forcing health professionals to become ritual specialists
. The recent trend in hospice care is an attempt to re-introduce the
spiritual dimension into death and dying. However, even if health care systems
start to include an awareness of the importance of spirituality for
psychological and physical health, these systems are not sufficient as a
support system because they are only peripherally involved after death.
Western society has distanced itself from death further by
emphasizing the value of youth- physical and mental prowess, and by making
death a taboo subject in our every day lives. For this reason, people with
secular attitudes may be shocked by death and unprepared for it. The shock may
be much more acceptable for traditional societies, such as Japanese society, where
formalized strong bonds with the deceased make death a part of every day life.
Though there is the need for medical attention, support
groups, and psychological counselling for the family after a death, in Japan traditional Buddhist/Shinto
practices provide comforts that medical systems cannot. These traditions
satisfy some of the needs of the grieving family and help the bereaved
transition towards recovery and acceptance after the death.
The Japanese Belief
The Japanese rites are born form the unique mix of Buddhism
and Shinto that makes up the Japanese belief system. The procedures followed
after a death tend to be mainly based on Buddhist practices though influences
from Shinto can be found throughout.
Buddhism came to Japan in the 2nd
century BC with the opening of the Silk Road. Afterwards
introductions of new doctrines came in waves and at least five schools of
Buddhism exist today in Japan. Buddhism is more a
philosophy than a religion in that the objective is not to preach doctrines but
rather to teach a method of attaining insight and a transformation of consciousness.The goal is to feel your fundamental
existence as part of the total energy of this universe .
Shinto is the indigenous religion of Japan. It has a deeply-rooted association
with agriculture that is focused on the life cycles of the land and its people
and has been practiced for over 2000 years. Shinto is
characterized by expressing gratitude to the “kami” (gods) through ritual.
These gods represent the life force of objects, places or spirits. Past
emperors and ancestors are deified as well as common objects. Many of the
divinities personify aspects of the natural world such as the rice harvest
(this god has nowexpanded to
business!), rocks, trees, the sky, thunder, and heavenly bodies. One of these gods, the Sun Goddess,
is believed to be the founder of the Japanese nation .
Philosophy and the Grieving Process
Shinto is based on a belief in the divinity of nature and
its natural cycles and processes. When the pain is so great, it may be
comforting for bereaved families to contemplate nature and the natural
processes for perspective. Here death and life are not necessarily “bad” or
“good” they just “are.”
Being exposed to Buddhist principle of
“impermanence” may help families in their grieving process.According to this philosophy, nothing endures, everything is always
moving through cycles. There is the idea in Japan that children are
“other-worldly” or close to the gods so that they slip with ease (or in other
words are vulnerable to death) back into the other world, soon to be reborn
. Since a baby is robbed of life so soon after it began, the idea of
reincarnation may be more comforting than thinking that the baby is gone
forever. It is a way to learn to live without the baby as a physical being but
accept him as a spiritual being who will continue to have a place in the home
and heart of the family, as well as the opportunity to live again.
During the grieving process, there is the challenge and
necessity of “letting go.”“Nirvana”
means to exhale, to let go. According to Buddhist philosophy attachment causes
suffering: do not cling and you will be in a state of Nirvana. With emphasis on
honoring, protecting, and caring for the baby’s spirit, the Japanese rites move
the bereaved actively, but gently away from attachment and towards acceptance
of the death. The rites formalize the process of letting go with a myriad of
Schedule of Ceremonies
After a death, an elaborate schedule of ceremonies allow
families the place and time they need to say good-bye gradually to their
babies. Families can opt to have ceremonies and family gatherings for their
child long after the child has died and the ceremonies can even bepassed on to future generations.
The Wake, Cremation and Funeral
When a baby dies the parents are allowed to take the baby to
their home. There they can spend a last night with the baby, clothing the baby
or bathing it
The wake traditionally takes place in front of the “saidan”
a temporary shrine that is erected in the home. However, recently many people
are having the wake at the temple or crematory. During the wake, candles are
lit and a flame is lit in a special lantern called a “chochin” in the belief
that the soul of the beloved baby will be guided to his loved ones by the
light. Incense is also kept burning during the wake. Family members take turns
staying up at night to make sure that it is burning. The smoke from the incense
is believed to float to the land of the dead to make sure that the baby will
know where the family is.
After the wake, the body is taken to be cremated, then to
the funeral “sougi” at the temple, a memorial for the dead child, consolation
for the soul and to repose the dead child’s spirit. Parents can bring the
child’s photo or special toy which will be displayed on the ornate alter during
the ceremony. The ceremony includes chanting of scripture by the monk to ask
the god Jizo to protect the beloved baby that died.
The Buddha, Jizo, the god of compassion and protector of
children, is believed to rescue the lost souls of children in the other world.
The world is envisioned symbolically as being divided by a river, the land of
the living on one side and the land of the dead on the other. During the
funeral ceremony Jizo is asked to help the lost souls of the babies (since they
are babies they are considered vulnerable) to cross the river, move into the
world of the dead, and to later be reincarnated. The chanting during the
funeral also works to transfer merit for the benefit of the deceased, making
sure his next life will be a good one.
The wake, cremation, and funeral are followed by
the Seven-day Ceremony, a Memorial Service every month on the same day of death
if desired and then the Forty-nine Day Ceremony.
Forty-nine Day Ceremony and Others
There is a memorial service for the baby 49 days after the
death that includes taking the urn that has been kept at home to the cemetery
and putting it into the small vault that is built into the family gravestone.
Sometimes the box is opened and the ashes are put directly into the vault to
mix with the ashes of other family members to become part of the family of
ancestors, however some stillbirth parents opt to keep the ashes at home. The
number forty-nine has special significance in Japan because four ‘shi” and nine “ku”
are synonyms for death and hardship. This day is important because it is
believed to determine the destiny of the soul .
Another service then takes place 100 days after the death
(this is originally a Shinto tradition). Afterwards memorial services will be
held at one, three, seven, thirteen and thirty-three years if following the
Buddhist schedule or 50 days, 100 days, one year and ten years if following the
Shinto schedule. Families will also sometimes have a memorial service every
month on the same day the baby died or every year on the anniversary of the
These services can be for family, friends, business
associates, and neighbors though recently it is often just the nuclear family
attending.Most families invite
relatives until the third-year ceremony and thereafter only the nuclear family
observes the tradition. After many years the family can ask the temple to
perform these rites.
Festival of the Dead
Another opportunity to honor the
baby takes place every year in August throughout Japan when there is a festival of the
dead called “obon.” It is believed that during this celebration the gates to
the other world are open so that departed spirits can return to earth for a
brief time to celebrate with their families. At this time most Japanese return
to their family home to honor their ancestors as well as younger family members
who have died. Parents can offer special treats for the baby at the shrine in
the house and the monk usually comes to the home to perform a short ceremony. A
festival is held throughout Japan where the Bon Festival dance
welcomes the spirits. The dance movements tell the story that the living
welcome the spirits from the other world and are comforted by their presence,
then send them back to the land of the dead until they can meet again next
year. The “chochin” (lanterns) are lit to light the way for the soul to find
his loved ones. This flame is extinguished on the last day of “obon” to send
the soul off back to the land of the dead.
The many opportunities to grieve show there is an
understanding that progress in grieving takes place little by little. In Japan, death is a part of every day life.
Ancestors are worshipped and considered part of the family at the altar in the
home. Small corner shrines embedded throughout Japan’s fields, towns, and cities, as
well as the large temples, offer opportunities for the bereaved to have a
moment for spirituality in their every day lives.
Offerings at the “Butsudan” in the Home
A “butsudan” is a small shrine that is fit into an alcove in
the home especially designed for it. This shrine is a small house-like
structure made of carved wood. The area in front of the shrine is set up with a
photo of the baby who died, candles, flowers, and incense as well as an “oihai,”
a wooden plaque bearing the baby’s saint name written in calligraphy. The
child’s favorite toy or one the parents want to give the baby and other
mementos are also placed before the shrine. Rice, water, fruit, and food the
child loved most are also prepared in tiny portions and offered on little
plates. This gives family members the opportunity to think, talk about , honor,
and care for the baby on a daily basis. It is an opportunity for siblings in
the family to ask questions and come to a better understanding of death. It is
also a way to say good-bye to the baby gradually while honoring him still.
Little by little daily offering may become less and eventually food is only
offered on special occasions like holidays or anniversary of the death .
Visiting the Temple
Visiting the shrine or temple and/or visiting the grave is
something that can be done any time, as much or as little as desired. It is an
opportunity for prayer, meditation, and remembering the baby.
When families go to the temple, first at the entrance they
must wash their hands to purify themselves before entering. Visitors then light
incense at the altar. The beautiful scent is said to refresh the mind and allow
them to wear a beautiful scent for the gods. It is believed that the lovely
scent floats to the other world to reach their baby. A large rattle hanging
before the altar is then shaken by the attached rope and the hands are clapped
twice, the sound of the rattle and clap is believed to get the god’s and loved
one’s attention before prayer .
Caring for “Mizuko” and Protecting the Baby
Parents have a strong urge to “parent” their beloved baby
who is no longer with them. The Japanese rites allow ways to care for and honor
the baby after death such as writing messages to baby on “kifuda” (wooden
tablets) offering food and toys to the baby at the shrine at home, buying a
“mamori” (charm) to protect the baby, or a “mizuko” (votive statue) at the
temple and taking care of it by dressing it and washing it.
A stone statue, “misuko,” (literally
meaning “water baby” suggesting that the baby goes back to the primal waters
from which life comes) can be bought with name painted on a stationary flower
vase at its base. The “mizuko” is also stationary. Hundreds or thousands of
these statues are erected at certain temples that specialize in performing the
rites for children. The stone statue is chubby and child-like. The statue
represents both the “misuko” or deceased baby and the Buddha Jizo that takes
care of him in the other world. The statues are erected to commemorate the lost
child, to pray for fertility or the blossoming of a new baby, and to protect
the children born into the family from now on. These include abortion,
miscarriage, stillbirth, and infant death to about two years old. According to
Buddhist beliefs, babies have souls from the time they are conceived. (The old
way of counting age was from conception, so that at birth the baby was one year
old, at the first birthday two years old, etc.)
Visiting family members pour water over the child-like
figurines to cool them and quench their thirst. Dressing the special statues
with bibs or hats and offering gifts of toys, food, and flowers are all
opportunities to “parent” the child, to care for the child who died.
Taking the time to grieve by using opportunities in every
day life and following the schedule of ceremonies allows families to work
towards acceptance of the death while honoring and caring for their beloved
baby. The Shinto/Buddhist philosophy of impermanence, life cycles, and natural
processes may help also.
1. Colin Murray Parkes, et al. Death and Bereavement
Across Cultures. Bruner-Routledge, 2003.
Buddhism, The Religion of No-Religion. Charles E. Tuttle co., Inc. Tokyo 1996
3. Reader I. Shinto, the
Religion of Japan.
Global Books, 1998.
4. LaFleur, William R. Liquid
Life, Abortion and Buddhism in Japan. PrincetonUniversity Press,
New Jersey, 1992
5. Vardaman, James M. And
Michiko Sasaki. Japanese Etiquette Today, A Guide to Business and
Social Customs. Charles E. Tuttle Co., Inc. Tokyo, 1994
6. Ohtei Toshi, Editor,Hito Me deWakaru, Kankou Sousai no Chishiki Hyakka. Shugu to Seikatsusha, Japan 1988
et al. Otera Naze Naze Jiten. Dia Hou Rinkaku, Tokyo, 1988
Meet Board Member Stephanie Fukui
I was born
and raised in Chicago. I have a B.A. in French, M.A. in Anthropology and have worked in translation, training
and management at software companies. Twenty-three years ago I moved to Japan with my Japanese husband after
losing our baby daughter at birth. I am the founder of the first support group
for bereaved parents in Japan called SIDS Family Association Japan and have made this my
life’s mission. From the very beginning, our group has supported parents of miscarriage,
stillbirth, SIDS, and other infant death. We are now a nation-wide organization
with 12 chapters. Along with our child care practice
studies, our campaign to reduce SIDS helped to reduce the SIDS rate by over 50%
in Japan. We hosted the 2006 SIDS International Conference. Our web page is mostly in
Japanese but there is a small English section: www.sids.gr.jp.
Outside of work, I am a student and performer of Japanese drum (taiko)
and facilitate drum circles at corporations, schools ,and live events.
Editors’ Note: Stephanie’s term as an ISA board member is coming to an end at
the end of this year. Stephanie has been an invaluable member of the ISA board and has contributed greatly.
She was particularly involved in the organisation of the 2006 ISA conference in Japan. Many thanks, Stephanie, and all the best.
Support organisations for bereaved families:
Focus on Japan and Asia
SIDS Family Association Japan. Supports
parents of miscarriage, stillbirth, SIDS, and other infant death. This
nation-wide organization has 12 chapters. They have conducted child care
practice studies and their campaign to reduce SIDS helped to reduce the SIDS rate by
over 50% in Japan. This
organization hosted the 2006 SIDS/ISAInternational
Conference. The web page is mostly in Japanese although there is a
small English section
viewable here: www.sids.gr.jp.
ISA POSITION STATEMENT RELEASED AS CONSULTATION DRAFT
released its first position statement on Decreased Fetal Movement as a
consultation draft. ISA is
welcoming comments and feedback from the entire stillbirth community. Please
click here to view
and provide feedback.
CALL FOR BIDS TO HOST FUTURE CONFERENCES
welcome submissions to host ISA
conferences in 2011, 2012 and beyond.For more information and to submit a bid please click here.
2010 JOINT INTERNATIONAL CONFERENCE WEBSITE LAUNCHED
In progress is a special stillbirth
series in The Lancet journal that will
be launched at the 2010 conference. This is a very exciting opportunity for the
conference, and the main authors will be giving keynote addresses at the
The conference committee continue to
plan the program for the event and are welcoming expressions of interests from
attendees, potential speakers, and particularly potential sponsors.Sydney, Australia is a beautiful city and the
conference offers a perfect opportunity for sponsors to promote their brand
alongside the International Stillbirth Alliance (ISA) as well as the International
Society for the Study and Prevention of Infant Death (ISPID).
ANZSA has completed
a systematic literature review of modifiable risk factors for stillbirth
relevant to the Australian and New Zealand setting supported
through funding by the Stillbirth Foundation Australia and also supported
through ANZSA secretariat funding by the Department of Health and Ageing, Canberra
The key findings of the review
showed the top ranking risk factors with a combined Population Attributable
Risk (PAR) of 45% were Maternal overweight
and obesity; Maternal age >35, and Smoking. Therefore, at a population
level, these factors are priority areas to reduce the stillbirth rate in Australia and New Zealand.
Uptake of the PSANZ perinatal mortality
audit guidelines: A survey of midwives and doctors in Australia and New Zealand.
Deficiencies in investigation and
audit of perinatal deaths results in loss of information and limits future
prevention. Such deficiencies led
the Perinatal Society of Australia and New Zealand to develop clinical practice guidelines for perinatal mortality.
This survey, of 133 lead maternity care providers in birth suites in 69 large maternity hospitals across Australia
and New Zealand, was undertaken to determine the use and views of the PSANZ
Guidelines, focusing on the investigation and audit aspects of the guideline,
two years after dissemination of the guideline.
workshops have since been developed as a way to implement the guidelines in an
interesting and effective way. The ANZSA IMPROVE program is an interactive
education facility to teach clinicians, obstetricians, gynaecologists,
pathologist, midwives, bereavement specialists, and other professionals working
in perinatal medicine how to incorporate the PSANZ Guidelines for Perinatal
Mortality Audit into clinical practice.IMPROVE adapts the guidelines into six hands-on and interactive
stations, with each station based on a component of the guidelines: perinatal
mortality classification, investigation, autopsy consent, placenta and post
mortem examination, baby examination, and perinatal bereavement.
News from our member organisations: Around the globe
SIDS & Kids Australia
Researchers look to video
games in hope of saving babies lives
world first, researchers at several Australian hospitals are using technology
normally found in video games and car airbags to better understand the high
incidence of stillbirth.
groundbreaking research has been partly funded by SIDS
and Kids and incorporates the accelerometer, a tiny electronic device that was
originally developed for car airbags and is now used in Nintendo Wii, the Apple
iPhone, and Nike+iPod shoes.
fetal monitor is being tested at the Royal Women’s Hospital, The Royal Brisbane
& Women’s Hospital (RBWH), and the Mater Mothers’ Hospital. It uses the
accelerometer technology to measure babies movements over a prolonged period of
of fetal movement causes anxiety for mothers and we hope that our research will
assist in alleviating this stress,” said RBWH research director, Professor Paul
Colditz. “We would not be able to conduct this crucial research without the
generous donations from fundraising activities such as Red Nose Day.”
team has two major aims for this research. One, that it provides a framework to
understand what a ‘normal’ pattern of movement is for a baby in the final term
– a topic that is vastly under-researched. And two, that it potentially leads
to a low cost, non-invasive device that could be attached to the stomach of
mothers who are concerned about lack of movement. “Ultimately, we hope that the
fetal monitor could be as straightforward as a heart rate halter monitor. It
allows us to follow the movement of a baby over a longer period of time, which
the current ultrasound technology does not allow,” said Royal Women’s Hospital
midwife and research co-ordinator Dr Christine East.
fetal monitor is currently in clinical trial stage and researchers hope to have
conclusive data about the clinical usefulness of the monitor when their studies
SIDS and Kids Victoria surveyed some of
their parents and asked them: “What was helpful and what would have been
helpful when in hospital after your baby died?” This is a summary of their
WHAT DO BEREAVED PARENTS WANT HOSPITAL PROFESSIONALS TO
professionals need orientation & ongoing inservicing on grief and loss.
-Bad news needs to be given in a sensitive manner and
support given immediately.
needs to be given clearly, repeated, given slowly, not all at
-Information is ‘taken in’ better before an induction
or medical termination.
-Parents need time to understand complicated
information and make decisions.
-Making too many decisions for parents is
-Dressing their baby in their own clothes or given
ones of appropriate size helps.
-Having reasons for the baby’s death helps with the grieving process.
-Some parents regret not having an autopsy.
-Parents need alternatives to autopsy eg. non- invasive tests of the
-Minimal sedation during labour– memory of the birth
is helpful in grief.
-Specialists need to clearly identify themselves and
explain their role.
-Staff need to network with family members – this
promotes better support.
-Privacy is essential when delicate matters are
discussed, for grieving and support.
-The baby’s name needs to be used at all times, be
shown dignity and respect.
-All relevant persons and departments need to be given
details of the death.
-Signs/symbols are needed to denote the death on doors
-Bereaved parents need time on their own but not to be
left on their own.
-It helps when staff show their sadness, cry with
parents and attend the funeral.
-Photos and memorabilia need to be kept by the
hospital until parents are ready.
-A checklist is needed to ensure all mementos are
need as much time as they request with their baby and may need explanation as
to how this will help them in their grieving
need information, support and encouragement to plan the funeral/ memorial
worn by the baby needs to be returned to parents – they become precious.
and non-judgmental support is required after a medical termination.
of the birth of tiny babies helps acknowledge the baby’s existence.
on different types of delivery needs to be given in prenatal classes.
when leaving the hospital ‘empty handed’ is crucial.
about drying up the milk and breast pumps needs to be given.
streamlined process for referral to support agencies is needed.
parents receive no support once they left hospital and feel let down.
need to follow up all parents 6-8 weeks after the death. This is often when
parents hit a ‘brick wall’ and may need a referral for counselling and support.
often cannot ring for support so a referral ensures outreach to them.
to genetic counselling is often required.
may need to return to the hospital to assist the process of closure.
prenatal classes for those having a subsequent baby are required.
Prepared by Petra den Hartog
Counsellor/Educator, SIDS and Kids, Victoria.
Sands UK(Sue Hale, PAC member)
welcomes Steven Guy, the newest staff member as Regional Coordinator in Northern Ireland. Steven’s involvement in Sands
began 16 years ago when his daughter, Danielle, was stillborn. He has had many
different roles since then but throughout this time his passion to help other
parents and to carry forward the three aims of Sands in Northern Ireland has always shone through.
will provide support to existing groups and help new groups open by acting as a
mentor and facilitating training.To
ensure the existing high level of bereavement care in the region is maintained,
he will strengthen the existing working relationships with each hospital in Northern Ireland and also the Health Board.To properly assess the provision of
bereavement care in the region and to identify training needs he hopes to
introduce an audit and monitoring system across Northern Ireland.Steven will be a key organiser in the presentation of our Saving Babies Lives Report 2009 to
Stormont in Spring 2010 in support of the Why 17? campaign. He will also work
closely with Sands research and media teams to implement the campaign.
Sands begins to fund research.
desperately needed if we are to understand why so many babies die before or
soon after their birth.Some causes of
stillbirth, such as pre-eclampsia and pre-term labour are known and there is
limited research going on into these areas. However, much more work is needed,
especially into those deaths which are unexplained.
We have begun by establishing our own research fund with
money raised through the hard work and dedication of our many volunteers. It is
critical that we invest that money, time and effort in research that is most
likely to transform the care of mothers and babies, and to save lives. This
summer took an important step towards making that research a reality as we are
now in a position to consider proposals for research from clinicians and scientists.
Like all research funding charities we need guidance from
research experts to help us pick out proposals for research that are good
quality and will make the most difference, seekingto be transparent and impartial.
So we have teamed up with Wellbeing of Women (WoW), a
charity that already has over 40 years of experience in funding research into
reproductive health. WoW works in close partnership with the RoyalCollege for
Obstetricians and Gynaecologists (RCOG) and their Research Advisory Committee
is drawn from RCOG members including leading experts in fetal and maternal
health. WoW hasa tried and tested – and
highly regarded - system for assessing and selecting research proposals that
are well designed, aim to answer relevant questions and are most likely to
produce results that count. The experts will review all the proposals that we
receive and recommend which are of an acceptable standard. Sands trustees will
then participate in the final selection of what to fund to ensure our views of
the research priorities are incorporated.
The first funding round is offering a maximum of £150,000
over three years. The advertisement for proposals was placed in the main
medical research journals in June, and a number of researchers have already
expressed great interest in applying.
WoW and Sands are both delighted to be collaborating in
funding research to prevent babies’ deaths. By combining our resources and
knowledge we believe we are well placed to attract and fund the best projects.
At the launch of the Saving
Babies Lives Report 2009 at Westminster in March this year Neal Long, Chief
Executive, pledged to raise £3million in the next five years to fund research
which will help prevent the deaths of more babies, and called on the government
to match that £3million. We hope this is just the start of stillbirth and
neonatal research receiving the funding it needs.
Suzanne Pullen, ISA committee member and supporter,
wins Galinson Scholarship Suzanne Pullen, full time Communication Masters
student and single mom to a toddler, turned the personal
crisis of the death of her baby Avery into an opportunity to help
others cope with the tragedy of an infant death in stillbirth. For her public
service and academic work, she has been selected by the California State University Foundation as a
Trustee Murray L. Galinson Scholar, distinguishing her among this year's 23
winners of the William Randolph Hearst/CSU Trustee's
Receiving one of the
top awards given at the state's 23 CSU schools gave Suzanne
another platform to raise awareness and compassion for families who have a
child die prior to birth. Suzanne has been active with First Candle
for the past 4 years. Last year, she completed a study of 624 bereaved parents entitled, "Giving Birth to
Death" focusing on care provider
communication during news delivery of a stillbirth diagnosis.Many parents perceived their care provider as
patient-centered, however, when they weren't it negatively impacted their grieving process. Most
patients had minimal exposure to stillbirth prior to their diagnosis (11%),
weren't satisfied with information they received during diagnosis, and
virtually all reported that their lives had changed significantly. Otherfindings were: most would have liked peer
contact info from the person who gave them the news, and they remembered the
exact words used during news delivery.
is now working on a qualitative study of memorable messages present in
stillbirth news delivery in order to recommend better communication strategies
for care providers, designing stillbirth news delivery simulations and applying
to PhD programs to continue her research when she graduates this year.
For more info, email her
Approximately 80% of women who had a stillbirth describe having noticed
decreased movement shortly before their baby died.(Editors’ Note: Many other moms have noted
decreased movement yet their babies lived). There is a shared goal in some
countries and regions to see if ‘movement awareness’ will ultimately save
babies lives.Moms are encouraged to
monitor movement, call their doctors if change occurs, go in to be checked, and
if appropriate-their medical caregivers will intervene to save the baby.
To that end, First Candle (www.firstcandle.org), with a
the Heinz Family Philanthropies, has initiated a new US initiative –
KICKS count! They have also joined forces with Finger Lakes Productions
International to secure celebrity spokespersons and produce high quality radio
public service announcements (PSAs) to deliver important information to
expectant parents on counting baby’s movement.
Their message is: Counting your
baby's kicks during your last trimester is a simple, free and effective way to
your baby's health. Many experts now agree that it may also help reduce the
risk of stillbirth.
Thousands of Kicks Count brochures have been made available to doctors,
midwives, and parents who wish to better understand this method of counting
movement toward the end of pregnancy with the goal of hopefully reducing
stillbirth.The guidelines suggest
paying attention to movement since, “What your baby is telling you with its
kicks (movements) is important!”It goes on to say that
there are reasons to call your doctor immediately,
“If your baby kicks less and less in the course of a day, or you don’t feel any
kicks on any given day…”The brochure suggests that, “…kick
counting is being recognized as the first proactive strategy that may reduce
the risk of stillbirth.”For more
information on this initiative, to download a brochure or a Kicks Count chart
(a tool to help keep track of the movement), visit
An Iowa nonprofit,
Health Birth Day, has a statewide Count the Kicks campaign also.They encourage people to visit www.countthekicks.org to learn more.
Newly Introduced Legislation will Support Education and Prevention
Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)) S1445, HR3212 (www.firstcandle.org)
First Candle has been influential in the introduction of Stillbirth and SUID
Prevention, Education and Awareness Act of 2009 which was filed on July 14 by
Senator Frank Lautenberg, D-NJ. A companion bill was filed in the House by
Frank Pallone, Jr., D-NJ-6. This bill would improve the collection of critical
data to determine the causes of stillbirth, SIDS and SUID, increase education
and awareness about how to prevent these tragedies in the future and expand
support services for families who have experienced a stillbirth, SIDS or SUID
The bill would expand activities to
identify the causes of stillbirth, identify ways to prevent it in the future
and increase education
and awareness about the issue among healthcare providers and parents.
US citizens are encouraged to contact
their House and Senate members as soon as possible to help by seeking
co-sponsorship, which will help it pass more quickly through a LETTER-WRITING
www.house.gov to get contact information for
the Congressman in your District. You will need your 9-digit zip code. If
you do not know your 4 digit extension, you can get it at http://zip4.usps.com/zip4/welcome.jsp. You will then be able link
directly to your Representative’s website.
www.senate.gov to get contact information for
your state's two Senators. Simply select your state from the drop down
menu to connect to your Senators’ websites.
representatives directly, or set up an appointment to meet with them
face-to-face. Writing a letter or sending an email can be effective as
well. Emails can be sent directly through your representatives’ websites.
A sample letter is available on the website.
Sharing a personal story is very effective. Copy First Candle on the letter or
an email detailing your conversation with your representatives for their files.
October awareness month events
Though we know most of these
activities have already occurred, we hope these events inspire you for future
programming and give you a sense of the worldwide efforts that are made each
year to promote October as Pregnancy and Infant Loss Awareness Month and
October 15th as Int'l Pregnancy and Infant Loss Day.
Sunday, October 18, 10 am, Memorial Walk, Pinky Flat, Torrens River, “Take the
steps our babies could not take…”, SANDSPauline@sandssa.org
Brisbane:Sunday, October 11, 9 am, Walk to Remember
and Memorial Service, New FarmPark
Sydney:Saturday, October 10, ,
Charity Gala Dinner, Courtside Function & Event Centre, Rod Laver Drive, Sydney Olympic Park, Tickets $100.
dancing, candle-lighting service, prizes, auctions, and raffles.Bears of Hope
Bay Hotel, CarlyonBay, St Austell, Cornwall. Thursday 15th October
and mingle. Candle Lighting at Refreshments available and support
from experienced bereavement support workers available.
London: Leicester Square Theatre, London. Thursday 15th October Concert in Aid of the Baby Loss Awareness
info: Organised by Life After Loss www.lifeafterloss.org.uk
Edinburgh: Saughton Winter Gardens, Edinburgh
EH11 3BQ Sunday 4th October at
of Our Beautiful Babies: Balloon Release
More info: Contact Angie 07760 196321 firstname.lastname@example.org
Edinburgh: The Sanctuary, The Royal Infirmary of Edinburgh,
Little France Thursday 15th October Candle Lighting at a short introduction (words and
music) prior to this and light refreshments to be served after.
More info: In conjunction with SiMBA and The Hospital
Spiritual & Pastoral Care Team
Sandy Young (Hospital) 0131 242 1990 or Sara Fitzsimmons
(SiMBA) 07917 054802
Square, Inverness Thursday
15th October Candle
More info: Highland Sands
CiaoLapo Onlus, charity for grief support after perinatal
death is organizing several activities in Italy. Among them:
10-11th - National meeting in Milan
15th - Local meetings all around Italy with candlelight ceremonies
(wave of light at ) and balloon release
18th - National meeting in Bologna, in the "Garden of Angels"
Bellingham, WA, Remembrance Walk & Ceremony, Sunday, October 11th from at the FairhavenVillage Green. Registration begins at the event at . The event included a memorial walk to the Taylor Dock and a
ceremonial scattering of rose petals on the bay. There was music, poetry,
sharing and community building, plus participants had an opportunity for a
meditative labyrinth walk at the Fairhaven Village Green.
The event is co-sponsored by
Mending BabyLossand Laughing Flower
St. Paul, MN: Mass
of God’s children, Oct. 6, 2009, Nativity of Our
Lord Catholic Church, 1900 Wellesley Avenue, St. Paul
commemorate and honor the life of children who died before or after birth.Whether the loss is recent or was years ago,
all are warmly invited to the healing Mass celebrated by Bishop Lee Piche. Babies' names were entered into the Book of Life. The Mass is co-sponsored by Nativity
parish and by God's Children, a ministry of the Archdiocesan Office for Marriage,
Family and Life. For more information, please call 651-291-4488.
Saratoga Springs, NY:Saturday,
October 17, 2009, Angel Names Association’s
(ANA) hosted its annual Memorial Walk at SaratogaSpaState Park
A day of
celebration, the annual Memorial Walk invited friends and remembered their
loved ones with a walk to remember and honor babies who have died too soon. At
this event, families who have experienced miscarriage walk alongside those who
have suffered the tragedies of stillbirth and infant deaths who died years, and
even decades, ago. The Memorial Walk supports bereaved families, raise
awareness about infant death and ANA’s role in the community, and provide people an opportunity to
contribute to ANA’s programs. More than $2,000 in raffle items and prizes for
the top three fundraisers of the day!http://www.firstgiving.com/14144
A Love Song
The mention of my child’s
may bring tears to my eyes
but it never fails to
music to my ears.
If you really are my
please, don’t keep me
from hearing the beautiful
It soothes my broken heart
and fills my soul with
Williams from Awakening from Grief by John E. Welshon
Recent stillbirth research update
The Placenta, Cord,and Cord
Fretts MD, MPH, Chair-ISA Scientific Committee
evaluation of the placental and cord function is an evolving area of research.
Some of the difficulties of studying the cord and cord accidents are related to
the way stillbirths are studied and classified. One reason for classifying a
stillbirth is to access the recurrence risk and to identify prevention
strategies. Unfortunately, many stillbirths have not been thoroughly evaluated.
The most important aspects of the stillbirth evaluation include examination of
baby, cord, and placenta together.
past, clinicians and parents may have had a sense of relief when after a stillbirth, an abnormality of the cord
is noted--Meaning to most people that the death was truly an “accident” and
there was no one is to blame. This assumption is too simplistic, however.
opinion of whether or not a placental or cord problem resulted in a stillbirth
depends not only of the findings at birth and but also the degree of pathology
present. In life, there is always a range of conditions. Cord loops and knots
are very compatible with a normal pregnancy outcome. Some mild cord and
placental abnormalities might be tolerated by a well grown baby but not by a
baby who is small and already shows signs of stress. As pathology increases,
however, so is the likelihood that the condition can cause a less than optimal
outcome and fetal death. The “level of evidence” to attribute a condition as a
cause of death is up for debate and because of this the number of stillbirths
that are classified as “unexplained”, related to “placental dysfunction” or
“cord accidents” is quite variable. Obviously, more systematic research is
required. This research update is specially focused on cord accidents and placental
there is also an international effort to clarify a classification system that
can help further our knowledge. In the Journal of Obstetrics and Gynecology,
Reddy and colleagues reported the results of an Executive Summary of the
National Institute of Child Health and Human Development on the Stillbirth
classification, developing an International Consensus for Research.
Overburdened and Undernourished, Angelika Bord, MD, Yatel, Valsky, Dept. of
OB/GYN, Hadassah-Hebrew Univ. Med Center, Jerusalem, Israel, www.AJOG.org (full
article available), Sept. 2007.
obstruction, signs of severe, IUGR (growth restriction), and nuchal cord
(around the neck 4 times) resulting in heart decelerations, baby delivered
early but alive.
Placental histologic criteria for umbilical blood flow restriction in
unexplained stillbirth, Mana Parast, MD, PhD, Crum, Boyd, Brigham and Women’s
Hospital and Harvard Medical School, Human Pathology, Vol. 39, Issue 6, pages
“Fatal hypoxic injury due to restriction of umbilical blood flow(‘cord accident’) may be causal in a subset
of unexplained late pregnancy stillbirths. Minimal histologic criteria’
suggestive of cord accident were defined as a vascular ectasia and thrombosis
within the umbilical cord, chorionic plate, and/or stem villi…Thus, we find
nonacute cord compression implicated in over half of “unexplained”
Ultrasound Diagnosis and Management of Umbilical Cord Abnormalities, Junichi
Hasegawa, Ryu Matsuoka, Kiyotake Ichizuka, Akihiko Sekizawa, Takashi Okai
Department of Obstetrics and Gynecology, Showa University School of Medicine,
Tokyo, Japan. Taiwan J Obstetrical Gynecology, March
2009, Vol 48, No 1.
“The incidence of placenta and umbilical cord abnormalities is high in abnormal
course of the delivery. Although the detection rate of umbilical cord
abnormalities is steadily increasing with the improvement of ultrasound
technology, and the fact that ultrasound scanning can distinguish umbilical
cord conditions, this information has not exerted much impact on the management
of labor to date. Prenatal detection of umbilical cord abnormalities can reduce
the number of emergency cesarean sections and intrauterine fetal deaths. In
this review, the authors describe the ultrasound diagnosis and management of
major umbilical cord abnormalities, including abnormalities of cord insertion
site (velamentous and marginal cord insertion), hypercoiled cord and nuchal
cord, consideringthe current knowledge
on physiologic and pathologic aspects of each umbilical cord abnormality.”
4. Does low
blood pressure increase the risk of stillbirth? Erick Hodgson, MD and E.
Norwitz, MD, PhD.,Chief of Maternal Fetal Medicine. YaleUniversitySchool of Medicine, Contemporary Ob/Gyn,
“Despite conventional wisdom, low blood pressure (hypotension defined as a
maximum diastolic blood pressure of less than 65 mm Hg) in the third trimester
may not be reassuring observation. Indeed, recent studies suggest that it may
be a risk factor for stillbirth. However, these data should be regarded as
Classification- Developing an International Consensus for Research, Executive
Summary of the National Institute of Child health and Human Development on the
Stillbirth. Reddy, U et al.Obstetrics
and Gynecology 2009:114;901-14.
summary was the result of an international meeting where experts reviewed the
strengths and weaknesses of our current and varied classification systems.
Ideally a classification system would include information on maternal
conditions and risk factors, fetal conditions and placental and cord pathology.
A strategy of including this information and grating the severity of the
conditions would help identify patterns and prevention strategies. This of
course relies on a comprehensive stillbirth evaluation.
6 . Diverse
placental pathologies are the main causes of fetal death; Korteweg et al.,
Obstetrics & Gynecology. 114(4):809-817, October 2009.
studied 750 couples with singleton intrauterine fetal death after 20 weeks of
gestation. They found the main causes of stillbirth varied by gestational age .
At lower gestational age, placental and unknown were the most dominant causes
of death (34.8% and 41.7%, respectively); at higher gestational age, the
relative importance of an unknown cause decreased and a placental cause
increased (16.5% and 77.6%) (P<.001). They concluded that most fetal deaths
were caused by a variety of placental pathologies. These were related to
gestational age, and their clinical manifestations varied during pregnancy.
Health in South Africa The Lancet Series Excerpt: The extensive research
and analysis conducted for the Lancet "Health in South Africa" Series provides a
detailed assessment of the country's health status and health system. Written
by a group of South African researchers, physicians, public health specialists,
and care providers the Series presents an overview of the burden of disease in South Africa and identify priority
interventions and actions. This Series culminates in a call for action for the
South African Government, for universities, training institutions, health
councils, researchers, and civil society. Everyone has a part to play and we
must all work together to strengthen the health care system in South Africa - strong leadership and
stewardship are critical. Click
access the full articles.
Contribution of smoking during pregnancy to inequalities in
stillbirth and infant death in Scotland 1994-2003: retrospective
population based study using hospital maternity records. BMJ 2009, 339(11),
b3754. Gray R, Bonellie S R, Chalmers J, Greer I, Jarvis S, Kurinczuk J J,
Williams C. Smoking is
known to increase the risk of stillbirth and infant death. Smoking is also
associated with higher levels of socio-economic deprivation. This study
examines the effect of smoking during pregnancy on the social inequalities gap
in stillbirth and infant death in a cohort of Scottish hospitals over a
ten-year period. It was found that stillbirth and infant death were more common
in deprived groups and that smoking during pregnancy accounted for over a third
of the social inequality in stillbirths and around a third of the inequality in
infant deaths. Although tackling smoking during pregnancy is a major priority
for reducing stillbirth and infant death, other measures to improve the social circumstances,
social support, and health of mothers and infants are needed. Click here to read
International reviews. BJOG special issue 2009, 116 (s1).
Over 99% of women who die from
pregnancy-related causes occur in the developing world. This special issue of BJOG: An
International Journal of Obstetrics & Gynaecology focuses on women’s health in low-resource settings. It includes topical
reviews and discussions surrounding health services and quality of care, as
well as a “How to…” series including information on providing technical
assistance, searching the internet for evidence-based care, and teaching. Click
here to access all the full articles.
In the last few months ISA welcomed three new
member organisations: Angel Whispers Baby
Loss Support Program from Canada, Evelyn Rose Foundation and the Star
Legacy Foundation both from the US.
Angel Whispers Baby Loss
Support Program is ISA’s first Canadian
organisation and exists to provide caring, confidential support services to
families who have experienced baby loss, as well as their caregivers.
Evelyn Rose Foundation (Associate
Member)is a new organisation
focused on providing a high standard of care for families, providing memory
bags to hospitals and providing high quality resources to families.
If you are part of an organisation that you think should
join ISA please contact Anais (ISA secretariat) at
free and can be applied for via the ISA website under ‘Join Us’. We are
always looking for new members to expand our community across the globe.
ISA: who we are
ISA Board Vicki
Flenady (Australia), Chair; Neal Long (UK),
Vice-Chair; Deb Boyd
(US), Treasurer; Frederik Froen
(Norway), 2008 Conference Chair; Leanne Raven (Australia), Secretary; Bob
Pattinson (South Africa), 2009 Conference
Chair; Ruth Fretts (US), Scientific Advisory Committee Chair; Sherokee
Ilse (US) co-chairs Parent Advisory
Committee; Stephanie Fukui (Japan); Carron Millard (Antigua); Belinda Jennings (Australia) Parent Advisory Committee
Co-Chairs: Liz Conway
and Sherokee Ilse
Members: Jillian Cassidy, Line Christoffersen,
Culling, Mairie Cregan, Sue Hale, Claudia and
Alfredo Ravaldi Scientific Advisory Committee
Co-Chairs: Ruth C Fretts, M.D., MPH
and Dr Jan Jaap H.M. Erwich, M.D., PhD
Members: Michael R. Berman, M.D.; Adrian Charles, M.D.; Wes Duke, M.D., MPH;
Flenady, MMed Sc (Clin Epid); Frederik Frøen,
M.D., PhD; Jason Gardosi, M.D. FRCOG FRCSED; Ron Gray; Marianne H. Hutti, DNS,
WHNP-C; Dr A H Jokhio; Luigi Matturri, MD, PhD;
Michael Paidas, MD; Richard Pauli, MD, PhD; Ingela Rådestad;
Co-Chairs: Sherokee Ilse
and Marian Sokol
Flenady, Stephanie Fukui, Grace
Guyon, Suzanne Pullen Fundraising Committee
Chair: Neal Long
Members: Carolyn Bray, Marion Currie, Vicki
Flenady, Stephanie Fukui, Moni Ryzeck, Marian
Sokol 2010 Australian Conference Committee
Flenady and Leanne Raven.
Members: Liz Conway,
Karen Faichney, Rosemary Horne,
Emma McLeod, Ed Mitchell,
Public Awareness and Health Promotion
Chair: Janet Scott
Flenady, Emma McLeod Join a Committee!
These committees always need new members. If you would like to be involved,
please visit our website or email
ISA Members and Associate
Become a member organisation and
contribute in a meaningful way to the work of ISA!
the ISA website for
details on how to become a member.
FEEDBACK WANTED! Let us know how we’re doing. Email email@example.com with your comments on this newsletter. What helped most? What
helped least? How could we make it more useful to you?
Submissions for the next edition of the newsletter are welcomed.
Submissions become the property of ISA;
they may be edited for length and
clarity and cannot be returned. Due to space restrictions, not all submissions
can be printed; we appreciate your understanding. Every effort has been made to
avoid errors; the Editorial team takes responsibility for any that remain.
Please email your submission to: firstname.lastname@example.org
EDITORIAL/WRITING TEAM:Sherokee Ilse, Stephanie Fukui, and Anais Gschwind.
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