Volume I, Number 1
Summer 2007
© 2007 ISA

The International Stillbirth Alliance Quarterly


“Collaboration for the understanding and prevention of stillbirths”

www.stillbirthalliance.org

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:

  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.

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 bereavement.
Its aims are to:

  • present the human consequences of stillbirth and other perinatal loss;
  • share information on current activities and research programs;
  • strengthen collaboration on initiatives to reduce perinatal death;
  • share knowledge and experience of best practice in healthcare when a baby dies; and

  • encourage networking and informal exchange.
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.”
 
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 beyond.

The “Scientific Stream”

The 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. 

Guidelines for healthcare workers on stillbirth care

Visit www.stillbirthalliance.org 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 www.stillbirthalliance.org today.

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 vicki.flenady@stillbirthalliance.org

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 regional office

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 (visit http://www.stillbirthfoundation.org.au for more information). ISA thanks the Mater Mothers' Hospital of Brisbane, Australia ( http://www.mater.org.au ), for hosting the ANZSA secretariat in this important and exciting work. 

Are you from South America, the Middle East 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 you! 

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 (vicki.flenady@stillbirthalliance.org or mariansokol@firstcandle.org ) to find out about joining our alliance. We want you!

Member news

In this section, news from member organizations will be highlighted in order to promote networking and learning among us. Submissions welcomed.
 
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 parents’ needs.
 
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 fundraising@uk-sands.org  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 http://www.firstcandle.org/windflower/index.html  for tickets.
 

Listening to…

Each issue of ISAQ will include an interview with an ISA founder, Board member or Committee member. We welcome suggestions.
 
…Sherokee Ilse
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 your work?
 
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 that.
 
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 others.
 

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 stillbirth:
 
· 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 fetal movement.
 
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.
 
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, please visit www.groupbstrepinternational.org.
 
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 www.missfoundation.org .
 

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.

-Sherokee Ilse

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 helpline@uk-sands.org , 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 circumstances.
 

ISA: Who we are

ISA Board

Antoinette M. Ayers, past President; 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 Co-Chair; Stephanie Fukui; Sherokee Ilse, Parent Advisory Committee Co-Chair, Recruitment Information and Communications Committee Chair; Neal Long, 2007 ISA Conference Committee Chair; Monica Ryczek, PhD, past Treasurer; Marian Sokol, PhD, Board Co-Chair 

Parent Advisory Committee
Pauline Allman; Line Christoffersen; Vicki Culling; Liz Davis, Co-chair; Sherokee Ilse, Co-chair; Sue Hale; Ros Richardson

Scientific Advisory Committee

Michael R. Berman, M.D.; Susan Crawford, M.D.; Adrian Charles, M.D.; Wes Duke, M.D., MPH; Dr Jan Jaap H.M. Erwich, M.D., PhD; Vicki Flenady, MMed Sc (Clin Epid);

Ruth C Fretts, M.D., MPH, Chair; Frederik Frøen, M.D., PhD; Jason Gardosi, M.D. FRCOG FRCSED; Marianne H. Hutti, DNS, WHNP-C; Dr A H Jokhio; Luigi Matturri, MD, PhD; Richard Pauli MD, PhD; Ingela Rådestad; Babill Stray-Pederson

Recruitment, Information and Communication Committee

Emma Kirkwood; Vicki Flenady; Frederik Froen; Keena Harding; Susannah Hopkins Leisher; Sherokee Ilse, Chair; Amanda Marsted; Marian Sokol

Fundraising Committee

Janet Carey, Chair; Vicki Flenady; Emma Kirkwood; Moni Ryzeck; Marian Sokol, Advisor

For details, please visit here

Member Organizations

Australia Australian College of Midwives
Australia National SIDS Council of Australia Ltd - SIDS and Kids
Australia Perinatal Society of Australia and New Zealand
Australia SANDS Australia National Council Inc.
Australia Stillbirth Foundation Inc.
Australia The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG)

Japan SIDS Family Association Japan

Norway Norwegian SIDS Society
Norway Perinatal Research Center

U.K. National Perinatal Epidemiology Unit
U.K. Royal College of Obstetricians and Gynaecologists
U.K. SANDS (Stillbirth and Neonatal Death Society)

U.S. First Candle/SIDS Alliance
U.S. Hygiea Foundation
U.S. National Stillbirth Society (NSS)

For details, please visit here

ISA NEWSLETTER STAFF



STAFF Editor: Susannah Hopkins Leisher; Layout: Jon Urbano

FEEDBACK WANTED! Let us know how we’re doing. Email newsletter@stillbirthalliance.org with your comments on this newsletter. What helped most? What helped least? How could we make it more useful to you?

SEEKING SUBMISSIONS! Submissions for the Fall 2007 newsletter are welcomed. They must be received no later than September 30, 2007, at  newsletter@stillbirthalliance.org 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.