The International Stillbirth Alliance Newsletter

 

Volume I, Number 2

December 2007

© 2007 ISA

 

“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.

 

The 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.

 

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.

 

The Bereavement Track

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 ).

 

The Scientific Track

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

L-R: Line Christoffersen (Norway), Ros Richardson (Australia), Sherokee Ilse (US), Pauline Allman (Australia), Liz Davis (Australia), Vicki Culling (NZ), and Sue Hale (UK).

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.

 

 

L-R: Dr. Tuti, Deb Boyd, and a friend from SANDS UK.

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.

 

L-R: Marian Sokol, Simin Taavoni, Dr. Uma Reddy.

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 .

 

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, knowing that our original goals are being met and in some ways exceeded!

Today, I continue to support stillbirth efforts from the sidelines as an advisory board member for ISA and First Candle. Most healing, though, for me and stillbirth parents everywhere is the acknowledgment that our babies' lives are important enough to study. Perhaps if we solve the mystery of their deaths, more babies of the future will live and the insights gleaned will improve health care for all of us. Today, that is my hope and my dream.

 

The stillbirth fact corner


Each issue of ISAN will highlight key stillbirth-related facts. We welcome submissions.

 

Prediction and Prevention of Recurrent Stillbirth

A recent article by MD/MPH Uma M. Reddy, published in volume 110 of Obstetrics & Gynecology 2007 (pages 1151-1164), describes research on the prediction and prevention of recurrent stillbirth. The abstract is summarized here.

 

Stillbirth is one of the most common of the negative pregnancy outcomes in the United States, occurring in one out of every 200 pregnancies. There is little information on what happens in post-stillbirth pregnancies. Having had a stillbirth is associated with a twofold to 10-fold increased risk of stillbirth in later pregnancies. The risk depends on the causes of the prior stillbirth, the presence of factors restricting fetal growth, the gestational age of the prior stillbirth, and race. Identification of the cause of the stillbirth can enable better estimates of the likelihood of subsequent stillbirths as well as better management of subsequent pregnancies. Having had a stillbirth also increases the risk of other adverse pregnancy outcomes in subsequent pregnancies, such as placental abruption, cesarean delivery, pre-term delivery, and low birth weight infants. Because fetal growth restriction is associated with almost half of all stillbirths, correctly diagnosing fetal growth restriction is essential. The use of customized growth standards will help in correct diagnosis, by distinguishing truly growth-restricted fetuses from small but healthy fetuses. Prenatal “fetal surveillance” and kick counts are also key in managing pregnancies after a stillbirth.

 

In other news…


In each issue of ISAN we will include other items of interest to the community. We welcome submissions!

 

ISA’s New Logo
The ISA board has recently signed off on a new logo for ISA which we feel more accurately represents us. We would like to acknowledge our volunteer graphic designer, Ross Gillespie, for his beautiful work. Thank you, Ross!

 

Back row, L-R: Liz Davis, Sherokee Ilse. Front row, L-R: Stephanie Fukui, Marian Sokol, Deb Boyd, Neal Long, Janet Carey, Ruth Fretts, Vicki Flenady, Frederik Froen.

Board changes

The 2007 ISA General Assembly at Birmingham saw the reappointment of many current board members and the addition of two new board members. Vicki Flenady (Australia) was elected as the new chair of ISA with Neal Long (UK) as vice-chair. Jack Moodley (South Africa) and Leanne Raven (Australia) are new additions to the board.

 

Two board members ended their term. ISA would like to thank Jan Carey who has served ISA as secretary since its inception and Marian Sokol who served as ISA co-chair and now acts as an advisor to the board. Frederik Froen (Norway) also stepped down as co-chair of the board in order to chair the 2008 conference committee.

 

October: Pregnancy and Infant Loss Awareness Month
For twenty years in the U.S., people and organizations have spent the month of October honoring babies who have died from miscarriage, stillbirth, neonatal death, and SIDS. The SIDS community was the first to chose this month and encourage people to raise awareness, promote education, and remember the babies who had died. It was only in 1987 with a Presidential Proclamation from Ronald Reagan that the other losses were included.

During this past October many, many events took place in the
U.S. and around the world that did these very things. There were walks to remember, memorial services, charity golf events, fun runs, fundraisers, in-services, special community meetings and more. One of the more special events is the October 15th Candle Lighting Around the World. At 7 pm on October 15 in every time zone people are asked to light candles to remember all the special babies who have died, making it a 24 hour continuous light around the world. Each year the number of participants is increasing. To learn more about this event, go to www.october15th.com .

 

Assistance for bereaved family members

 

Facing the Holidays

Adapted and excerpted from the booklet “Coping with Holidays and Celebrations” by Sherokee Ilse

 

You have suffered the loss of your beloved baby or older child. You miss him or her and the future you had hoped for. Now, around every corner, it seems there are other people who look forward to holidays, birthdays, and other special family events. You, on the other hand, may not share that joy. Grief often resurfaces around the time of significant events, which can add stress and anxiety…special days can be painful reminders to you about who is missing in your life. Yet, at other times, you may find this togetherness acceptable and even comforting.

 

Follow your heart. You may want to share what you are doing to cope, and why, in the hope that others will be there for you. They may not fully understand, but that’s not in your control. You only have control over what you do. Be kind and tactful, but also be assertive and strong in taking care of yourself during these special days.

 

The following are a few ideas to consider as you face holidays such as Christmas, Hanukkah, and New Year’s (or other holidays that are special for you):

 

-          Examine your attitudes and expand your thoughts. First, think about what usually happens, and what your role usually is. How do you feel about this day and the festivities? Are you comfortable with doing things the way you always have? Or are you anxious and concerned? Will it be too painful to follow the usual traditions? Besides wishing it away or wishing for your child back…do you seek something else this year? You can be more in charge of how you handle these days by thinking ahead about what you want and what you hope will happen.

 

-          Speak up. Acknowledge your feelings. Tell others what you need. Don’t wait for them to guess. They will probably guess wrong so you might as well help them out (this of course could also help you out).

 

-          Think of ways to reach out to others in memory of your child at this time. Whether it is a donation, giving of your time to a charity, or buying toys in honor of your child, you may find that in giving, you get some comfort.

 

-          Be realistic and plan ahead. Rethink each tradition and your role in its observance. Is it necessary to entertain as much, to send out cards to everyone on your list, or to attend every function you are invited to? Examine your priorities and the energy you have. Weigh them and choose only what you can handle. Unless you really feel that you can and want to do everything, it is probably wise to scale back.

 

-          Change traditions. Your life has changed. In fact, the whole family has changed. Maybe now is the time to do some things differently. You might decide to go on a trip instead of staying home. Or maybe you change the site of the festivities, the order, or add in a special memorial time to honor those missing. However, be careful not to change too many things too quickly. With tradition can come security and you may need that stability right now.

 

-          Look for moments of love and joy. Spend time remembering what, or who, you are thankful for. Let those moments, no matter how few, wash over you and lift your spirits…if even for a short time. Remember that even in the midst of this tragedy, there may be things you can be thankful for—such as the support of family and friends, a renewed sense of faith, or the brief time that you spent with your baby.

 

-          Do what is meaningful to you and your family. Trust yourself. Be honest about what you really want and need to happen.

 

There are many websites where you may find more specific ideas and resources for coping with the holidays. Here are a few:

 

·         www.aplacetoremember.com

·         www.centeringcorporation.com

·         www.firstcandle.org

·         www.missinggrace.org

·         www.missfoundation.org

·         www.sandsqld@powerup.com.au

·         www.uk-sands.org

·         www.sands.org.nz

·         www.SIDSandKIDS.org

 

 

ISA : WHO WE ARE


ISA Board

Antoinette M. Ayers, past President; Deb Boyd, Treasurer; Liz Davis, Parent Advisory Committee Co-Chair; Vicki Flenady, MMed Sc (Clin Epid), Board Chair; Ruth Fretts, MD, MPH, Scientific Advisory Committee Chair; Frederik Froen, MD, PhD; Stephanie Fukui; Sherokee Ilse, Parent Advisory Committee Co-Chair, Recruitment Information and Communications Committee Chair; Neal Long, Board Vice-Chair; Jack Moodley; Leanne Raven; Monica Ryczek, PhD, past Treasurer.

 

Parent Advisory Committee

Co-Chairs: Liz Davis and Sherokee Ilse

Members: Pauline Allman; Line Christoffersen; Vicki Culling; Sue Hale; Ros Richardson

 

Scientific Advisory Committee

Chair: Ruth C Fretts, M.D., MPH.

Members: 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); 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

Co-Chairs: Sherokee Ilse and Marian Sokol

Members: Vicki Flenady; Frederik Froen; Keena Harding; Susannah Hopkins Leisher; Amanda Marsted, Stephanie Fukui

 

Fundraising Committee

Chair: Neal Long

Members: Vicki Flenady; Moni Ryzeck; Marian Sokol.

 

2008 Conference Committee

Chair: Frederik Froen

 

Join a Committee!

These committees always need new members. If you would like to be involved, please visit our website or email info@stillbirthalliance.org  

 

ISA Members and Associate Members


From
Australia and New Zealand:
 

·         Australian College of Midwives

·         National SIDS Council of Australia Ltd. (SIDS and Kids)

·         Perinatal Society of Australia and New Zealand

·         Royal Australian and New Zealand College of Obstetricians and Gynecologists

·         SANDS Australia National Council, Inc. 

·         Stillbirth Foundation, Inc.

 

From Japan:
 

·         SIDS Family Association Japan

 

From Norway:
 

·         Norwegian SIDS Society

·         Perinatal Research Centre

·         Norwegian Society for Perinatal Medicine

 

From the U.K.:
 

·         National Perinatal Epidemiology Unit, University of Oxford

·         Royal College of Obstetricians and Gynecologists

·         SANDS (Stillbirth and Neonatal Death Society)

 

From the U.S.:
 

·         First Candle/SIDS Alliance

·         Hygeia Foundation, Inc.

·         National Stillbirth Society

·         Evie’s Network

·         MEND

 

From Italy:
 

·         Ciao Lapo

 

From the Netherlands:
 

·         Groningen Center for Perinatal Mortality - Dept Obstetrics and Gynaecology University Medical Center Groningen

 

Associate Member from China:
 

·         Hong Kong Polytechnic University School of Nursing (China)
 

FEEDBACK

 

FEEDBACK WANTED! Let us know how we’re doing. Email info@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 next edition of the newsletter, to be released in May 2008, are welcomed. They must be received no later than April 10, 2008, at info@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 that remain.

EDITOR Susannah Hopkins Leisher