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The
International Stillbirth Alliance Newsletter
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Volume
I, Number 2
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December
2007
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© 2007 ISA
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“Collaboration for the understanding and prevention of stillbirths”
www.stillbirthalliance.org
The goals of ISA are:
1.
TO CONNECT professionals, organizations and
individuals for the purposes of initiating research on, educating about, and
promoting awareness of stillbirth.
2.
TO COLLECT information worldwide that is
related to stillbirth for families and researchers and store it in a central
repository.
3.
TO EDUCATE on recommended precautionary
methods through publicity campaigns aimed at the public and the medical
community.
The Third Annual ISA Conference 2007
The
Third Annual ISA Conference was held from 29 September to 2 October in
Birmingham, U.K. The
three-day event united over 200 researchers, healthcare professionals and
affected family members from 26 countries, including Australia,
Botswana, Canada, China, Eire (Ireland), England , India, Iran, Italy, Japan,
Malaysia, Mexico, Nepal, the Netherlands, New Zealand, Nigeria, Northern
Ireland, Norway, Pakistan, Scotland, South Africa, Switzerland, Sweden, the
U.S.A, Vietnam, and Wales.
This was a very special, emotional
conference. The bereavement track’s daily plenary sessions included poignant
talks from bereaved father Steven Guy and bereaved mothers Sam Springall and
Suzanne Pullen, reminding scientists and caregivers from day one what the
conference, and indeed ISA itself, is all about—thousands and thousands of
families with stillborn babies.
Some scientists were so moved that they
came forward to talk about their own stillbirth losses, recognizing they were
there not only as scientists but also as bereaved parents. Read on page 3 one
such father's story and how attending the conference changed his life.
There were so many brilliant and beautiful
sessions that it is impossible to adequately summarize, but we will attempt to
do so anyway by sharing some highlights. For more information, visit our
website,
www.stillbirthalliance.org
.
v
The Story of Raja was a powerful, moving DVD presented by Vicki Culling from New Zealand. Raja's family chose to continue his pregnancy in order to have the
entire family meet him although he was destined to die. In New Zealand approximately 75% of families bring their babies home after death
to meet the family and be in the home environment before final burial or
cremation. For more information on SANDS NZ, go to
www.sands.org.nz .
v
The Grief in the Workplace
session by Liz Davis of Australia offered practical suggestions for the support of bereaved family
members returning to work. To obtain the brochure and DVD, write to
sandsqld@powerup.com.au
v
In
Enabling Parents by Providing Informed Choice, Line Christoffersen of Norway shared
specific decisions families face and offered recommendations to health care
providers on how to empower families to make the best decisions at the time of
loss.
v
Helping
Grieving Dads Find the Right Tools, led by Tim Nelson from the U.S. and Steve Hale from the
U.K., focused on how boys are socialized, how men's outward behavior does not
reflect their inner turmoil, and more. Tim is author of the booklet A Guide
for Fathers which may be obtained at
www.aplacetoremember.com .
v
Tim also
worked with Sherokee Ilse of the U.S. to present and discuss the strain that
stillbirth places on couples, offering suggestions for strengthening relationships
over time. Tim and Sherokee are completing a Couples’ Booklet, soon to be
available from
www.wintergreenpress.com
.
v
Christine
Bodkin shared her experience in another session on helping bereaved individuals,
couples, and children as a counselor with Edwards Trust Sunrise, UK (see
www.edwards.trust.org.uk
).
v
Guidelines and experiences
of bereaved families in Taiwan was presented by
Hui Lin Sun and in another session Moon Fai Chan presented his experience of
attempting to improve the bereavement care provided by nurses in China as
a tribute to his son who was stillborn.
v
Many and diverse presenters
gave the audience a look into stillbirth experiences in the Muslim culture and
various other religious traditions as well as in same-sex families.
v
Tomasina Stacey of New Zealand studied the effects of involving bereaved families in risk factor
studies which was clearly viewed by the participants as beneficial.
v
Ros
Richardson and Liz Davis of Australia reported on Models of Care, involving
bereaved parents in contributing to the PSANZ (Perinatal Society of Australia
and New
Zealand) guidelines for care providers in Australia and New Zealand. Meanwhile, the newly released and revised
“Pregnancy Loss and the Death of a Baby—Guidelines for Professionals” for the U.K. were presented by Alix Henley and Judith Schott
(see www.uk-sands.org ).
Visit our website to learn which countries have adopted formal standards of
care (go to
www.stillbirthalliance.org and click on
“Resources, Clinical Standards of Care/Protocol”).
v
Dr. Michael Berman of Yale
spoke on behalf of care providers, offering an obstetrician's perspective on
perinatal death. His gentle, compassionate style included stories and poetry
(some written by him). Dr. Berman is the founder and president of Hygeia, an
online international support organization for bereaved families (
www.hygeia.org ).
Many researchers presented
throughout the three days; it was exciting to see how much knowledge we are
gathering that has previously been ignored. Some highlights:
Global perspectives. Estimates of numbers
of stillbirths globally are imprecise as definitions and data collection
systems are far from standard; in many parts of the developing world, stillbirths are not registered at all. However, some
things are clear. The number of stillbirths globally is very large—from 3.5 to
5 million deaths each year. The vast majority of stillbirths (90 to 98%) occur
in developing countries. Stillbirth rates in developed countries are around 3 to 5 per 1,000; in developing countries
they range from 30 to 50 per 1,000. Within some countries, stillbirth rates
rise to 100 per 1,000 in specific regions, usually rural areas and areas of
urban poverty.
Understanding stillbirth through audit. An audit is a means of systematically reviewing possible risk factors,
practices and outcomes, and identifying means of improving
the quality and effectiveness of health service provision. Researchers from
South Africa, Australia, Northern Ireland and England reported on studies which aim to improve
understanding of the factors associated with perinatal death in
their regions.
The South African study
highlighted areas where care is suboptimal, in particular care during labour,
and the results have been used to develop new intrapartum care
guidelines. Vicki Flenady reported the preliminary results of an
Australian population-based study across three states on singleton unexplained
stillbirth which suggested that, compared to healthy liveborn babies, some
maternal and pregnancy characteristics were associated with unexplained fetal
deaths, e.g. maternal age, smoking, fetal growth restriction and more maternal
medical conditions.
The Northern Ireland study looked at socio-economic inequalities as
they relate to stillbirths, finding the rates in most deprived areas to be 20% higher than in
the least deprived. The Birmingham study looked at perinatal death in relation to social deprivation and
ethnicity. Analysis of data collected on stillbirths in England is limited by the absence of data on all pregnancies against which stillbirth data can be
compared. The Perinatal Institute has started to collect denominator data in
the BBC area and used it for this study, which found perinatal death rates
were higher amongst ethnic minority groups and in areas of deprivation.
Fetal activity and growth. This session heard
from researchers from Norway, the U.S., New Zealand and the U.K. who are investigating issues of reduced fetal movements and poor growth
of the baby in utero.
The Femina Project is
collecting data on fetal movements in Norway and the U.S. This study looked at how decreased fetal movement
(DFM) is identified, defined and managed. They found that reduced movements in
a pregnancy represent a risk of poor outcome, but that information for women
about DFM and management of DFM is very variable. Guidelines need to be
developed. The Boston study looked at pregnancies where DFM was reported
and reviewed the cases which ended in stillbirth. They found a link
between DFM and growth restriction. Recommendations for management of DFM were
made and the need to raise awareness of DFM with care providers
and mothers was emphasised.
Lesely McGowan from New Zealand reviewed the issues around fetal
growth restriction and looked at how detection of small for gestational age
babies might be improved, including the use of customised
growth charts and appropriate use of ultrasound. She highlighted
the international SCOPE study which aims to develop a reliable early
pregnancy screening test for SGA (small for gestational age) and pre-eclampsia
using clinical, biochemical and Doppler tests. The Perinatal Institute in
Birmingham found a very high proportion of deaths were
potentially avoidable with different care. Protocols for detecting high risk
pregnancies are urgently needed.
Placenta: structure and function. Scientists from Holland, the U.K., and the U.S. presented research on the placenta. No more than around 40% of parents agree to an autopsy in
much of Europe and the U.S.; valuable information is lost. It was agreed that in
the absence of a full post mortem, a post mortem on the placenta, including the cord, was extremely
valuable.
Dutch researchers presented
a study on placental causes of stillbirths, showing 65% of intrauterine fetal
deaths have a placental cause. Many placental subcategories were identified.
Researchers in Cambridge are investigating the possibility of establishing a screening test early on in pregnancy that
could help determine how well the placenta will
function through the pregnancy.
Post mortems and anomalies. The importance of post mortem was very much a theme throughout the conference. American research points to
the fact that having an autopsy made it possible to confirm whether a baby had suffered from a congenital abnormality or not and to better
understand the cause of death.
According to the Perinatal
Institute in Birmingham, the number of stillbirths experienced by Black
African and Pakistani ethnic groups is higher than among other groups. A significant proportion of those stillbirths have congenital
abnormalities, which may be partly due to the fact that Pakistanis are among
the least likely groups to want antenatal screening and terminations for
abnormalities. Diet and the impact of
intermarriage may also play a part. These communities are also among
the least likely to agree to a post mortem.
Pathologists in
Birmingham presented their work on
diagnosing growth restriction at post mortem. Using customised growth charts,
they confirmed high incidences of growth restriction in stillborn babies.
Pathologists from Western Australia are investigating the potential of post
mortems in identifying bacterial infections.
Infection and inflammation. At least 90% of stillbirths occur in the developing world and half of those are related to an infection,
compared to 15% in the developed world. Scientists are looking at what role
infection (both to the mother and baby) and
inflammation (the body’s reaction to infection) play in stillbirths. In
some parts of the developing world more than 50% of stillbirths are
associated with an infection including, among others, malaria, syphilis and infection of the membranes and amniotic fluid through poor hygiene. Screening for some
of these diseases is much needed. In the developed world between 9 and 15% of stillbirths are associated with
infection. Certain genetic, physical and environmental factors can increase
the inflammatory response of the baby to even a
minor infection.
Prevention of stillbirths. Research aimed at
preventing stillbirths by assessing risk in pregnancy was presented. Gordon
Smith from Cambridge University discussed the critical importance of good statistical design in
studies which attempt to estimate the risk of perinatal death. Flawed analysis
of data can lead to erroneous conclusions. He presented issues to consider in
data collection and analysis. Fredrik Froen from Norway presented work on stillbirth and decreased fetal
movement. New guidelines on managing decreased fetal movement, combined with
information for mothers about monitoring fetal movement, has led to a
reduction in stillbirths in the Norwegian study.
Lesely McCowan reviewed work on reducing the numbers of babies who are small for gestational age. A reliable method
for predicting pregnancies at risk of SGA is needed. A small number of
therapies appear to have a beneficial effect on improving fetal growth in
some cases, but more work is needed in this area. Smoking cessation has been
shown to reduce the rate of low birth weight babies.
Classification of stillbirths. Globally, many different systems are used to classify
the cause of death when a baby is stillborn. A major flaw of older
classification systems has been the high proportion of
deaths which are described as unexplained: for many of these deaths the cause may be understood but not categorised. In
particular, the role of growth restriction is omitted. Much useful
data is lost.
Different systems reflect
different resourcing levels, clinical review processes and levels of post
mortems for different countries, and contrasting views about how much of
the “chain of events” which leads to a death should be incorporated into
the classification.
Several evaluations of
the different classification systems were presented. There are many
obstacles to developing a system which can be used globally which would be
superior to the WHO (United Nations World Health Organization) system.
Different countries face different challenges in reducing mortality and
implementing good classification and auditing systems.
To find out more,
visit
www.isa2007.org and download
the complete abstracts or email us at
info@stillbirthalliance.org .
The
Fourth Annual ISA Conference 2008
We would like to invite you to the Fourth
Annual ISA Conference 2008, to be held November 5-7, 2008, in
Oslo, Norway.
Preparations are well under way. If you would like to be a speaker or
involved in conference preparations, please email the 2008 Conference Committee
Chair, Frederik Froen, at
Frederik.Froen@stillbirthalliance.org.
The conference website is accessible at
http://www.stillbirthalliance.org/conference/2008/ .
Please note that it is under construction and will be updated regularly in the
coming months.
Check out our website!
In each issue of the
International Stillbirth Alliance
Newsletter (ISAN), this section will highlight a recent addition to our
website.
Stillbirth
Article for Wikipedia
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L-R:
Line Christoffersen (Norway), Ros Richardson (Australia), Sherokee Ilse (US),
Pauline Allman (Australia), Liz Davis (Australia), Vicki Culling (NZ), and
Sue Hale (UK).
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Over the past six months, ISA’s Parent
Advisory Committee has worked collaboratively on an article to be put on the
ISA and Wikipedia websites on “Understanding Stillbirth.” Parent leaders from New Zealand, Australia, Norway, England, and the U.S. were led by Vicki Culling of SANDS NZ and Ros Richardson of SIDS
and Kids Australia in this effort. The article gives a layperson's overview of
stillbirth (a medical portion will be added soon) which addresses some of the
key choices parents should have when their baby dies. From creating memories to
autopsy and funerals, the importance of saying hello before saying goodbye is
emphasized. Involvement of all family members is encouraged and a discussion of
the natural grief response is also included. To read the entire article, go to
www.stillbirthalliance.org and follow the link on the homepage titled
“Understanding the Basics of Stillbirth.”
Suggestions
Sought!
We are in the process
of updating the research and publications section of the ISA website in order
to make it easier to navigate and more accessible. If you have any ideas or
suggestions, please email
info@stillbirthalliance.org
.
ISA across the globe
At the Third Annual ISA
Conference 2007, many nations were represented. In this issue, ISA is pleased
to introduce you to conference participants from Africa, Asia and the Middle East.
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L-R: Dr. Tuti,
Deb Boyd, and a friend from SANDS UK.
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Nigeria… Dr. Tuti from Nigeria
came to the Third Annual ISA Conference as an obstetrics doctor to present his
work. During the event he listened to bereaved parents (the first being Stephan
Guy) tell the entire assembly about their babies, their pain, their love, and
their support—very moving and touching. What this did for Dr. Tuti is remind
him that he and his wife had had a stillborn baby years ago whom they had never
talked about, seen, or grieved. Dr. Tuti was invited onto the stage two days
later where he cried and shared his very moving story. He had come as a
researcher, quite focused on the science, and was leaving as a dad committed to
talking with his wife and to changing bereavement care in all of Nigeria.
This is what we at ISA call success. This is why we need to bring researchers and bereaved families together at our
conferences. This is the start of something big by one man in a country that
does not serve the needs of bereaved families at all. Dr. Tuti will work to
change it, and it was at our conference that
he awakened because of the beautiful people there who touched his heart and
supported him during those three days.
Vietnam… Meeting obstetricians from developing countries at the conference in
Birmingham was a great honor and quite inspiring. Stephanie Fukui of the ISA
board was fortunate enough to have spent time talking to Dr. Nguyen Thi Haoi
Duc who told about the difficult conditions in her country. Dr. Nguyen is 75
years old and amazingly strong. The torturous trip to England
from Asia for the conference didn’t seem to bother her. But her strength was
even more apparent to Stephanie when she realized that Dr. Nguyen is moving
mountains in Vietnam, despite a complete lack of resources.
Dr. Nguyen stands less than five feet tall
but is a person of great stature in her community. She is the Director of the
Institute for Reproductive and Family Health (RaFH), an NGO that is doing
amazing things in Vietnam. Check out their website at
www.rafh-vietnam.org . Dr. Nguyen explained
to Stephanie that limited medical care in Vietnam
means that 69% of the stillbirths are due to infection. Some of these
infections are from serious diseases, and because there are few hospitals and
such poor access to modern medicine in the remote northern and central highland
provinces, infections cannot be treated aggressively, resulting in the loss of
babies’ lives. On top of that, there is a grave need for education. Dr. Nguyen
said that obstetricians in Vietnam
may not be as concerned about infection as is warranted because they are not
informed about the risks of infection. Also, even though the cost of medical
care is fairly reasonable, mothers typically do not come to clinics for
prenatal care because of lack of education, among other factors.
Dr. Nguyen’s goal is to set up research and
perinatal care projects for the ethnic minority people in the northern and
central highland provinces. She would also like to build hospitals in these
areas. With her powerful determination to change the suffering caused by
stillbirth in her country, she is truly a living treasure. She is trying to
make a difference in this world and we sincerely hope that the ISA community
can find a way to help.
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L-R: Marian Sokol, Simin
Taavoni, Dr. Uma Reddy.
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Iran… Simin Taavoni holds
M.Sc. degrees in medical
education and midwifery and is a faculty member and researcher at the Iran
University of Medical Sciences. Simin traveled to the Birmingham
conference to share her research after learning about ISA and the conference
while searching the web for an organization that also has the initials ISA.
When she discovered that the purpose of the conference and the call for
proposals fit perfectly with her research, she immediately sent in her
proposal.
Simin's work with bereaved families of stillborn babies focuses on
maternal-fetal bonding. She has compared stillbirth mothers in their next
pregnancies with non-stillbirth mothers. She learned that mothers with a
previous loss (stillbirth or neonatal) experienced a decrease in maternal-fetal
attachment as compared to first-time mothers who had had no losses. This
finding has important implications for the type of care offered to previously
bereaved mothers during subsequent pregnancies.
Simin is a mission-driven woman who has worked hard for decades to make life
better for the Iranian people, whether working on
pregnancy loss, chronic pain, or HIV/AIDS. It was a pleasure for
conference-goers to meet her and get to know her.
Member news
In this section, news from member organizations will
be highlighted in order to promote networking and learning among us.
Submissions welcomed.
Call for
Volunteers
ISA needs volunteers to
assist with writing research summaries. Can you write professional
plain-language summaries of research paper abstracts? If you have this much
sought-after expertise, we urgently need you to help us with our monthly
research alert. Any assistance much appreciated.
Contact info@stillbirthalliance.org or via our website at
www.stillbirthalliance.org .
We are also looking for
a Volunteer Coordinator who can work with closely with a few of the committee
chairs in finding jobs for the many who volunteer for ISA. Another part of the
job is to oversee these volunteers which will be beneficial to all involved.
Australia and New Zealand
Stillbirth Alliance (ANZSA)
ISA’s first regional office, the Australia and New Zealand Stillbirth Alliance
(ANZSA), has been officially approved by ISA. In line with ISA’s vision, ANZSA
has been established to with the aim of reducing stillbirth and improving care
for affected families through high quality research, clinical practice
improvement and raising public awareness in the Australia and New Zealand region
and through ISA to contribute to the global problem of stillbirth. ANZSA has
received funding from the Federal Department of Health and Ageing in Canberra
Australia for its first year of operations. ANZSA is an alliance of
organizations and individuals with a wealth of experience in the areas of
research, clinical practice, parent support and advocacy and public awareness
campaigns. In December 2007 the ANZSA Board met to take forward its works plan
which includes establishing clinical networks across ANZ to improve the quality
of care for families who have had a stillbirth. Fur further information please
go to the ANZSA website:
www.stillbirthalliance.org/anz or contact Vicki Flenady:
Vicki.flenady@mater.org.au
ISA is Growing!
Since
the last newsletter, ISA is proud to welcome five new members and one associate
member, for a total of 21 members.
For more information and links,
please go to our website
www.stillbirthalliance.org
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Listening to…
Each issue of ISAN will include an interview with an
ISA founder, Board member or Committee member. We welcome suggestions.
Listening to…Toni Ayers,
Founder, ISA
When the labor and delivery doctors attached the
monitors to my swelled belly on July 27, 2002, I was seven centimeters dilated
and excited to deliver our little Maddie, the daughter of my dreams. But they
could not find her heartbeat and, in that moment, my life changed forever.
Shock, disbelief, horror, despair and anger ruled my world for the next few
years. From then to now there remains the primary question: What happened? What
happens to some 26,000 American babies born still every year?
To answer that question, three stillbirth moms, including me, founded the
International Stillbirth Alliance (ISA) in Chicago. We three
wanted ISA to gain and focus the attention of researchers and doctors to answer
our burning question. We were bold. We wanted ISA to become the center for
stillbirth research around the globe. I brought my know-how as an entrepreneur
and marketer to the table, and the other moms brought their expertise. Monica Ryczek developed the roadmap
for making ISA a viable non-profit advocate for stillbirth. Using her
experience as a principle in a start-up company, Monica helped qualify ISA as a
tax-exempt charity and worked closely with Antoinette Ayers in developing
content for the website. Co-founder Mary Geitz used her experience in
developing hospital bereavement programs and her background as a certified
grief counselor to ensure that ISA addressed the needs of grieving families
mourning the loss of a stillborn child. Together, ISA goals were developed and
what was once a vision became a reality.
Five years later, ISA is a worldwide voice
for stillbirth with 21 members from nine countries, spanning
four continents. Three international conferences have been held and another is
planned for Oslo in 2008. Researchers, concerned care providers, and bereaved
families have attended these conferences, bringing their unique perspectives to
the table and learning from each other. In addition, the website continues to
expand, sharing research updates, international support resources, and network
opportunities for all who visit it. Stillbirth, a long ignored topic, has
become a passion for the Scientific Advisory Committee, the Parent Advisory
Committee, the Board of Directors and all of ISA's supporters. This is
heartening to see, k | 