“Collaboration for the understanding and prevention of stillbirths”
The International Stillbirth Alliance (ISA) is a
non-profit coalition of organizations dedicated to understanding the
causes and prevention of stillbirth. Our mission is to raise
awareness, educate on recommended precautionary practices and
facilitate research on the prevention of stillbirth. ISA serves as a
centralized resource for sharing information and connecting
organizations and individuals.
ISA philosophy is to unite groups around these issues and use our
strengths as a whole to make a difference. We believe that having a
centralized place for stillbirth issues and sharing information will
accelerate progress. Together, groups can provide the public with
accurate and validated information about stillbirth.
The goals of ISA are:
TO CONNECT professionals, organizations and
individuals for the purposes of initiating research on, educating
about, and promoting awareness of stillbirth.
TO COLLECT information worldwide that is related to
stillbirth for families and researchers and store it in a central
TO EDUCATE on recommended precautionary methods
through publicity campaigns aimed at the public and the medical
Don’t miss your
chance: ISA Conference 2007!
Register now for the Third Annual ISA Conference at www.isa2007.org
This year’s conference, the third annual, will be held from 29
September to 2 October at the Ramada Hotel and Resort in Birmingham,
U.K. The three-day event will unite researchers, healthcare
professionals and affected family members from around the world.
Sessions will provide participants with much-needed information on
emergent research, as well as exploring ways of ensuring the best
possible support is given to those affected by infant death. The
conference aims as well to stimulate multidisciplinary discourse
among research scientists. Hence, we are particularly pleased that
three two-hour sessions will be devoted to scientific discussion
among world-renowned physicians and scientists focusing on the
definition, classification and diagnosis of stillbirth.
The conference is open to anyone who is interested in or affected by
stillbirth. Participants will include a diverse range of scientists
and public health and clinical health professionals including
obstetricians, gynaecologists, midwives, social workers,
psychologists and pathologists, as well as volunteers and bereaved
parents, grandparents and siblings. About 300 people are expected on
each day of the conference.
The conference will be run in two parallel streams: scientific and
Its aims are to:
According to Marian Sokol, ISA Board Co-chair, “The
conference offers an extraordinary opportunity for research
scientists and families to come together in a spacious yet private
resort setting near Birmingham to explore issues related to
perinatal loss and prevention. As with the past two ISA conferences
in Washington and Yokohama, the experience this time around promises
to be enlightening and motivational.”
present the human consequences of stillbirth and
other perinatal loss;
share information on current activities and research
strengthen collaboration on initiatives to reduce
share knowledge and experience of best practice in
healthcare when a baby dies; and
encourage networking and informal exchange.
Neal Long, ISA Conference Chair (and Director of SANDS), reports
that the first registrations have already been received, and
attendees from Australia, Canada, China, France, Japan, Malaysia,
Mexico, the Netherlands, New Zealand, Norway, Sweden, the U.K., and
the U.S., as well as the United Nations’ World Health Organization
in Geneva, are already confirmed. Don’t miss your chance; visit
www.isa2007.org today to register!
The “Bereavement Stream”
The bereavement stream will focus on the
impact of perinatal loss and how parents and families can be best supported in
the short and longer term. The program will highlight recent examples of good
practice in both the professional and voluntary sectors. There will be an
interactive workshop session each afternoon. These will look specifically at
the different characteristics of care givers and the importance of ensuring
they too have support, the issues around providing care in a multicultural
community and the continuing needs of families during the first year and
The “Scientific Stream”
scientific program will seek to examine the epidemiology, associated factors
and pathology of stillbirth and perinatal loss. Participants will debate how
to improve prevention through better protocols, clinical care and audits.
Among those slated to join the discussion are many specialists at the
forefront of research in this area, including Adrian Charles (Australia), Phil
Cox (U.K.), Jan Jaap Erwich (Netherlands), Vicki Flenady (Australia), Ruth
Fretts (U.S.), Frederik Froen (Norway), Jason Gardosi (U.K.), Robert
Goldenberg (U.S.), Lesley McCowan (New Zealand), Bob Pattinson (South Africa),
Uma Reddy of NICHD (U.S.), Gordon Smith (U.K.), and Jelka Zupan of WHO.
Meet our hosts
The Perinatal Institute is a U.K.
National Health Service organization based in Birmingham, West Midlands. Since its inception in
2000, it has been working to improve the understanding of factors underlying
perinatal loss and methods needed to avoid adverse outcomes. It runs perinatal
registers, clinical audits, screening programs, and various training
initiatives aimed at implementing evidence-based strategies for prevention.
SANDS is the U.K.'s leading stillbirth and neonatal death charity. A parent-led
organization, it offers support to anyone affected by the death of a baby,
before or after birth. It works in partnership with health professionals to
improve the care and services bereaved families receive, and promotes research
and changes in practice that could reduce the loss of babies' lives.
Check out our website!
In each issue of the International Stillbirth Alliance Quarterly (ISAQ), this section will highlight a
recent addition to our website.
healthcare workers on stillbirth care
and click on “Resources” for clinical standards of care/protocols for Australia, Canada, New Zealand, and
the U.S. (and see “Member news”
below for the latest U.K.
guidelines, just introduced by SANDS.)
Vicki Flenady from the ISA Recruitment, Information and
Communication Committee is pleased to have this latest resource up and running.
She reports that major progress has been made on ISA’s website. It is now much easier to navigate and has more
information and resources for you, whether you are a researcher, care provider
or bereaved family member. Visit
ISA continues to
develop the website, aiming to provide a comprehensive resource library on
stillbirth for professionals and parents. Please send feedback and
contributions to the ISA
secretariat at email@example.com
ISA across the globe
The ISA Board welcomes our first
member from Asia!
ISA Board Co-Chair
Marian Sokol is thrilled to report that Stephanie Fukui, Executive Director of
the Japan SIDS Family Association, will be filling a vacancy on ISA’s Board. The Japan SIDS Family
Association is also ISA’s first
Asian member, vividly demonstrating ISA’s commitment to broadening our representation and reach beyond Europe, Australia/New Zealand, and North America. Stephanie’s appointment will
be ratified during the ISA
General Assembly at the 2007 ISA Conference in September.
ISA to open its first
Vicki Flenady, ISA Board member, reports that the Australia and New Zealand Stillbirth Alliance (ANZSA), recently established
with funding from the Australian Department of Health and Ageing, is working
with ISA to establish our first
regional office. This inaugural office will help to further ISA’s work around the world. One of the
first tasks of ANZSA in collaboration with ISA is to conduct a comprehensive review of the international stillbirth literature to identify areas for improving
care in the prevention of stillbirth, as well as priorities for future
research. This work is being generously supported by the Stillbirth Foundation
more information). ISA thanks
the Mater Mothers' Hospital of Brisbane, Australia (
for hosting the ANZSA secretariat in this important and exciting work.
Are you from South
or Africa? We want you!
Jan Carey of ISA’s International Fundraising Committee is hard at work seeking
funding to enable ISA to
increase its interaction with people from developing countries. The Fundraising
Committee is open to anyone who has the skills and desire to assist. We want
The Scientific Advisory Committee welcomes
participation for researchers and clinicians from developing countries to
ensure that your needs are addressed. We want you!
ISA is always seeking new organizations to join our
international efforts towards understanding and prevention of stillbirth. In
particular, if you
represent a stillbirth-related organization from another country, especially from countries outside those currently represented at ISA (Australia, Japan, New Zealand, Norway, the U.K. and the U.S.), please contact the ISA secretariat (firstname.lastname@example.org
) to find out about joining our alliance. We want you!
In this section, news from member organizations will be
highlighted in order to promote networking and learning among us.
SANDS UK announces new guidelines on bereavement
SANDS UK has just launched a new edition of SANDS’ “Pregnancy Loss
and the Death of a Baby: Guidelines for Professionals.” The
guidelines were presented to an audience of 170 health professionals
and parents on June 12 in London.
Since the SANDS Guidelines were first published in 1991, they have
become widely recognized as an essential benchmark for good practice
when caring for parents who have a childbearing loss. This new
edition is based on research findings and on widespread discussions
with health professionals, parents and voluntary organizations. It
covers losses at any stage during pregnancy, including early and
late miscarriage and termination for fetal abnormality, as well as
stillbirth and care for very ill babies and those who are likely to
die shortly after birth. As well as describing what constitutes good
care, the Guidelines offer practical guidance on how to meet
Written by Judith Schott, Alix Henley and Nancy Kohner, expe
eerienced writers on health care issues, the Guidelines are rooted
in the principles of informed choice and parent-led care.
To obtain a copy, visit
www.fundraisingforsands.org where copies for U.K.
addresses can be purchased (£16.99) or email
to find out postage rates for your country.
SANDS Awareness Month
Sands Awareness Month 2007 has just ended, culminating in a memorial
service at the Sands Garden of the National Memorial Arboretum in
Staffordshire, for all those affected by the death of a baby.
Join First Candle at the 2007 Annual Windflower Ball
First Candle invites ISA members and all those affected by
stillbirth to come together in October at the 2007 Annual Windflower
Ball at which Dr. Roberto Romero and Ms. Colleen Barrett will be
honored with the Windflower Award. Dr. Romero is a leading
stillbirth researcher, Chief of the Perinatology Research Branch and
Program Director for Obstetrics and Perinatology of the U.S.
National Institute of Child Health and Human Development. Ms.
Colleen Barrett is President of Southwest Airlines and the Juvenile
Products Manufacturers Association. Join us at Cipriani 23rd Street
in New York City on October 11, 2007, to honor these individuals and
support First Candle, the leading U.S. charity in the field of
infant survival. We hope to see you there! Visit
Each issue of ISAQ will include an interview with an ISA
founder, Board member or Committee member. We welcome suggestions.
ISA Parent Committee Co-Chair, Recruitment, Information and
Communication Committee Co-Chair, and ISA Board member; author of
Empty Arms and many other stillbirth-related books; international
speaker on the topic of pregnancy and infant loss; mother of three
babies who died too early and two healthy children.
International Stillbirth Alliance Quarterly: Thank you for making
time to talk with us, Sherokee. Would you begin by telling us how
you came to be involved in ISA—what is your personal connection to
Sherokee Ilse: My involvement with ISA and the "world
of stillbirth" comes from a very painful, personal experience. After
a miscarriage, my husband David and I had a perfect pregnancy that
ended in the stillbirth at 40 weeks of our son, Brennan William.
Life would never be the same. As a means to help others, and myself,
I wrote a book for families sharing guidance at the time of the loss
and over time. I also began speaking in my community and eventually
all over the world teaching care providers how to understand
families and give compassionate and wise care. If families could
minimize their regrets and receive better care, healing could come,
along with the recognition that their baby would always be an
important member of their family. Seven books and seven booklets
later, I continue the mission of helping people as often as I can.
Over the years (25 of them), I have co-founded a national pregnancy
and infant loss organization, written for newsletters, spoken at
support groups and conferences, and been on boards to support
families and boards to help prevent pregnancy loss. When Toni Ayers
asked me to become more actively involved with ISA a few years ago,
I jumped at the chance to support her important mission (and that of
her co-founders). I have been on the board for about two years and
consider it an honor to help improve care for families.
In addition, for decades I had hoped, prayed and worked to have
stillbirth rise to the place where money was allocated and spent to
look for causes and move toward prevention. First Candle and ISA
were the first two organizations to take that on. In my opinion, it
is about time. The future is very exciting and full of hope when it
comes to better understanding stillbirth.
ISAQ: What have been the biggest changes in
bereavement work on stillbirth since you started in the field? What
are the biggest roadblocks to progress?
SI: The first [change] that was needed was that a baby
was actually viewed as a person and therefore a loss to be mourned.
Prior to the early 80’s, the football pass philosophy (pass the baby
out of the room before mom or dad could see him/her) was prevalent.
In 1981, it was common to move forward, ignore it, and pretend it
didn't happen. It was commonplace to not name or bury the baby. We
had to change that first before we could move to more sensitive
care. I remember someone actually said to me, "Well, be thankful
that at least he wasn't born yet. What if he had been two and then
died?" We had to help people see that in order for us to heal, we
needed to have permission and legitimacy—our baby was real, existed,
and we had the “right to mourn.” I spent years trying to help open
up hearts to that reality. Next we had to teach nurses and others
the importance of taking pictures, creating memories, and involving
families in the whole process, because having memories is a key to
healing over time. They give families comfort and a common
conversation about this important little person over time.
People's attitudes, often confused because of the abortion debate—is
it a human being or not—were a roadblock. Money was and is always a
problem—money for hospitals to run support groups, to pay
bereavement specialists to coordinate good in-house and follow-up
programs, and of course to investigate why 60 percent of stillbirths
are still unexplained and most are not yet fully investigated.
What can be done about this? I believe organizations like ISA…are
changing this. Legislation efforts to allocate more money and denote
stillbirth as a priority are crucial. Continued training for staff,
including doctors, clergy, funeral directors, and social workers,
must occur so no one slips through the cracks and all are working
together with the same goals in mind. It is also important to make
sure that every country has excellent protocol and practices in
place, especially developing nations who have a higher rate of
stillbirth. Therefore, coordination and working together with each
other is vital. Many people do wonderful work—now we need to spread
ISAQ: Can you tell us about the conference scheduled
for October 2007? Many of our readers are from outside the U.K. and
it's a long way to travel—why is it worth it?
SI: Networking with others who care deeply about this
issue is invaluable. Each and every ISA conference I have
participated in has been fantastic. There is so much to learn from
each other, and it is important that we, who often find ourselves
tired and overworked, can be re-inspired. Learning about the latest
research, taking time to relax and play together, honoring and
reaching out to the bereaved, and sharing pictures and stories of
our babies who have died all occur at the conference. The reasons
for attending go on and on. Then of course, there is the, "Isn't it
time to visit the U.K. and be a tourist for a day or two?" argument!
I do hope that people will join us—the conference planners really
understand and respect the bereaved families because they have been
there and they have worked hard with the care providers, too. They
will honor and reach out to each participant in a special way.
The stillbirth fact corner
Each issue of ISAQ will highlight key stillbirth-related
facts. We welcome submissions.
The death of a baby before birth is devastating for parents and
families. Worldwide, there are approximately 4.5 million stillbirth
deaths each year and until recently there has been no international
forum for research, data collection and/or prevention strategies
dedicated to solving these tragic infant deaths. While there have
been advances in health care and improved health outcomes in many
areas, the rates of stillbirth have not decreased and in fact in
some regions the rates may be increasing. Despite the enormous
burden to individuals, families and public health systems,
stillbirth continues to go largely unrecognized.
It is clear that stillbirths in developing countries constitute the
majority of the global burden of these deaths. In developed
countries, while the rate is lower (approximately 10 per 1,000
births), stillbirths still make a significant contribution to
adverse pregnancy outcomes. Unfortunately, in up to 50 percent of
stillbirths, a clear reason for the death is never identified. With
decreasing perinatal mortality rates, stillbirth without apparent
cause constitutes the most frequent stillbirth category. The
contribution of unexplained stillbirths appears to be on the
increase. In the vast number of these losses, the death occurs
unexpectedly towards the end of pregnancy where, had the baby been
born alive, the chance of survival would have been high. The lack of
a diagnosis leaves little clue for parents and care providers
struggling with decisions about future pregnancies and how the risk
may be reduced for all women in pregnancy. For some stillbirths
mothers report a reduction in fetal movements before the death and
in up to 50% of cases the baby shows signs of growth restriction at
birth. These factors indicate that there may be an opportunity for
preventing some stillbirths. Maternal factors which significantly
increase the risk of stillbirth include maternal overweight or
obesity, advanced maternal age and cigarette smoking. Women with
these risk factors require closer surveillance during pregnancy.
The program of the Third Annual ISA Conference in the UK
(www.isa2007.org) has been developed to address these problem,
particularly from the perspective of meeting the emotional needs of
affected families. No matter what the cause of death, there is an
immediate and ongoing need for bereavement support to families, and
a formidable challenge to pursue research as well as strategies that
will lessen the risk of future loss for these affected parents and
In other news…
In each issue of ISAQ we will include other items of interest
to the community. We welcome submissions!
Increased awareness of fetal movements to reduce stillbirth
In a recent Harvard study of self-reporting by mothers, Drs. Fretts
and Froen reported a four-fold risk of stillbirth among mothers who
detect decreased fetal movement. Two specific strategies were
recommended that might reduce adverse pregnancy outcomes, including
· Educate patients on the importance of fetal movement in an effort
to reduce the delay of intervention; and
· Assess fetal growth in the evaluation of patients with decreased
Awareness of a baby’s movements: Advice for mothers
Movement is the best indicator of the baby’s wellbeing. Kick
counting is a practical way for a mother to track the baby’s
movements. As a guide, starting from 24 to 28 weeks, pick one time
during the day when your baby is most active. Know that your baby
has sleep cycles. When your baby is awake, note the time it takes
for your baby to have 10 discrete movements—kicks, jabs, twists, and
turns. Most babies will do so in less than 15 minutes. Call your
doctor or midwife if you feel your baby is taking longer than usual
to reach 10 kicks or is taking longer than two hours. Discuss kick
counting with your care provider as there are sometimes differences
of opinion about the best way to monitor a baby’s movements during
Pregnancy and Infant Loss Awareness Month
October is Pregnancy and Infant Loss Awareness Month in many
countries throughout the world. Consider sharing your links and
ideas for activities you hope to host during this month. Although
our website will not list actual events, in an effort to help groups
network with others, we will keep adding resources and links.
July is International Group B Strep Awareness Month
According to the U.S. Centers for Disease Control (CDC), Group B
Strep (GBS) is the most common cause of life-threatening infections
in newborns and is the leading infectious cause of neonatal
morbidity and mortality. Untreated, GBS can cause sepsis, pneumonia,
and meningitis, leading to sight or hearing loss, mental retardation
or death. GBS-related sepsis and meningitis in newborns results in a
4 percent fatality rate among those infected. Group B Strep
infection of the newborn is largely preventable. Pregnant women
should talk with their doctors about GBS. For more information,
Over 20 U.S. states have passed the MISSing Angels Bill
The U.S. organizations MISS Foundation and the National Stillbirth
Alliance have been working with contacts from each state to pass a
law that allows for the issuance of a new state certificate known as
the "Certificate of Birth Resulting in Stillbirth” (CBRS) by a
state's vital records office for any stillborn infant. Now bereaved
parents in 20 states can receive a Certificate validating the birth
of their stillborn baby; in most states this is retroactive. Parents
are encouraged to check the website of their state Health Department
offices to learn more and to apply for retroactive certificates.
Every state in the U.S. already issues a fetal death certificate for
all stillbirths. Many parents want to have their child's birth
certificate in addition to his or her death certificate and in many
countries this is already routine. Unfortunately in the U.S.,
without legislative change, no recognition of the birth is offered
to a family who has experienced stillbirth. While minimal concern
has been expressed by some, to be clear, this bill does not pose a
threat to reproductive freedom. In some states, language is inserted
into the bill defining stillbirth as legally distinct from abortion.
For more information, please visit
Assistance for bereaved family members
Your baby has died. What can you do?
Talk about it. Help it become a natural part of life that others can
see and begin to understand. When you are strong enough, be prepared
to share a few thoughts on how your community of family and friends
can be supportive.
Be a parent. Say your child's name, create more memories and
mementos, share his or her pictures if you have them. And most
importantly, remember that you are the parent of this child and you
always will be.
Involve other children. They will learn from you how life and
death work. This is a difficult but special time to let them know
that you all will survive, but it won't be easy. A beloved child
will always be a part of the family, though he or she has died. Help
your other children find ways (puppets, drawing, music, talking,
reading books) to express their feelings.
Believe in each other and tomorrow. Stay close to your
partner, even if you are grieving differently (a most common thing).
Keep talking and telling each other what you need and then respect
the differences that will arise. Believe your relationship can get
better—it can, if you work at it and have a positive attitude.
Choose to believe the best of what you say and do for each other,
rather than the worst. Have hope that the sun will shine again
someday; your days won't be all so bleak. BUT they must be for a
while because, after all, when you love someone so much of course he
or she will be missed and you will hurt. That is a sign of your
love. It is necessary for you to mourn your child in order to heal
and see new possibilities. Believe you can make it. Many, many, many
others have survived and grown over time despite wondering if they
could or should. You can make it. Watch for the rainbow moments and
appreciate them when they come. Believe in tomorrow. Believe in
possibilities, if even for a few seconds or minutes in the early
days and weeks.
SANDS support in the U.K.
SANDS offers a range of support services through its national
helpline, which is open Monday to Friday 9:30 am–5 pm London time on
020 7436 5881 or by email at
email@example.com , as well as through its website (www.uk-sands.org
), which is soon to be relaunched, its online forum and the networks
of volunteer-run groups around the U.K. These groups are able to
offer support meetings where parents can meet others in similar
Who we are
Antoinette M. Ayers, past
Deb Boyd, Treasurer;
Janet Carey, Secretary,
Fundraising Committee Chair;
Liz Davis, Parent Advisory Committee Co-Chair;
Vicki Flenady, MMed Sc (Clin
Epid), ISA 2007 Nominations Committee Chair;
Ruth Fretts, MD, MPH, Scientific
Advisory Committee Chair;
Frederik Froen, MD, PhD, Board
Sherokee Ilse, Parent Advisory
Committee Co-Chair, Recruitment Information and Communications Committee Chair;
Neal Long, 2007 ISA Conference Committee Chair;
Ryczek, PhD, past Treasurer;
Marian Sokol, PhD, Board Co-Chair
Liz Davis, Co-chair;
Scientific Advisory Committee
Michael R. Berman, M.D.;
Susan Crawford, M.D.;
Adrian Charles, M.D.;
Dr Jan Jaap H.M. Erwich, M.D., PhD;
Vicki Flenady, MMed Sc (Clin
Ruth C Fretts, M.D., MPH, Chair;
Frederik Frøen, M.D., PhD;
M.D. FRCOG FRCSED;
Marianne H. Hutti, DNS, WHNP-C;
Dr A H Jokhio;
Richard Pauli MD, PhD;
Information and Communication Committee
Emma Kirkwood; Vicki Flenady; Frederik Froen;
Keena Harding; Susannah Hopkins Leisher; Sherokee Ilse, Chair; Amanda Marsted;
Susannah Hopkins Leisher; Layout: Jon Urbano
Let us know how we’re
with your comments on
this newsletter. What helped most? What helped least? How could we make it more
useful to you?
SUBMISSIONS! Submissions for
the Fall 2007 newsletter are welcomed. They must be received no later than
September 30, 2007, at
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
Editor takes responsibility for any which remain.