The International Stillbirth Alliance Newsletter

“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.

2008 International Stillbirth Conference

A joint conference of ISA and WHO
hosted by the Norwegian Society of Perinatal Medicine
Co-hosted by Norwegian SIDS and Stillbirth Society and
Perinatal Research Center, Rikshospitalet University Clinic

The International Stillbirth Alliance and the World Health Organization are pleased to announce the 2008 International Stillbirth Conference in Oslo, Norway on November 5 – 7, hosted by the Norwegian Society of Perinatal Medicine.

The 2008 International Stillbirth Conference’s key topics will be:

• Developing countries and social inequities – policies and programs for effective prevention of stillbirths
• The challenge of fetal growth restriction – the epidemiology, causes and management to prevent deaths
• Excellence of care: prevention and management – the best evidence for management of pregnancies and stillbirths

For more details, visit www.stillbirthalliance.org/conference/2008

Keynote Speakers

Preliminary program of confirmed titles and speakers
  
Venue

Registration
 

ISA is Growing!

Since the last newsletter, ISA is proud to welcome three new full members and one associate member.

For more information and links, please go to our website www.stillbirthalliance.org

Welcome to our newest Full ISA members:

• Swedish National Infant Fund

• The Institute for Reproductive and Family Health (RaFH) - Vietnam

• CiaoLapo Onlus - Italian stillbirth support organization

Swedish National Infant Fund

The Swedish National Infant Fund (Spädbarnsfonden) organises seminars and activities all over Sweden offering the latest research and information on topics such as SIDS, mothers who smoke and the effects of nicotine, the effects of alcohol, and the risk factors involved for older mothers. Its website hosts a forum for grieving families who have lost a child to share their stories and thoughts. It also offers a strong support network for families and access to a national helpline for people in crisis.

For more information on this organisation and any of its activities see www.spadbarnsfonden.se

The Institute for Reproductive and Family Health (RaFH)
 

The Institute for Reproductive and Family Health (RaFH) was established in 1993 as a Vietnamese non-profit and non-governmental organisation (NGO). RaFH is operating in the fields of gender, sexuality, reproductive and family health in the northern, southern and central provinces of Vietnam, focusing on rural, mountainous and remote areas, ethnic minorities and disadvantaged groups of women and children (female victims of domestic violence and trafficking, sex workers, HIV/AIDS infected and affected people).
RaFH’s goals of improving reproductive health and ensuring safe motherhood has brought it to focus on the high stillbirth rate in Vietnam. Most stillbirths occurring there are caused by infection and can be prevented through education and better health practices. RaFH is working for improvement by training midwives and nurses, organizing workshops and seminars, publishing educational materials, implementing intervention programs and updating knowledge and technology on gender, sexual and reproductive health and rights, women’s and children’s rights, safe motherhood, family planning, and HIV/AIDS prevention.
See www.rafh-vietnam.org  for more information on the many activities and accomplishments of this impressive organization.

CiaoLapo Onlus - Italian stillbirth support organization

CiaoLapo Onlus ( www.ciaolapo.eu  ) in a non-lucrative (non-profit), non-religious charity organization founded in 2006 by Claudia and her husband Alfredo (a medical doctor as well) in the loving memory of their second child. 

The goals of CiaoLapo are to:

• promote research on stillbirth

• to offer psychological support to parents after stillbirth or perinatal death.

CiaoLapo is currently offering weekly online self-help groups to bereaved parents and free online psychological and gynaecological consults to members, in Italian language on the website www.ciaolapo.it 

CiaoLapo is a member organization of the Hygeia Foundation, Member Organization of the Stillbirth And Neonatal Death Society (Sands-UK) and Full Member Organization of the International Stillbirth Alliance (ISA).
 

Welcome to our newest Associate ISA member:

Seattle Children’s Office for Prevention of Prematurity and Stillbirth, based at Seattle Children’s Hospital

Funded by Bill and Melinda Gates, Seattle Children’s has established a new Office of Prevention of Prematurity and Stillbirth, which takes a comprehensive approach to understanding these devastating birth outcomes. This two-part initiative is under the direction of Craig Rubens, MD, PhD, and Professor of Paediatrics at the University of Washington School of Medicine.

The initiative will :

• identify published and unpublished data performing a gap analysis on the current status of preterm and stillbirths around the world and

• host an international summit, which will be held in Seattle in 2009, organized by Seattle Children’s and funded in part by the Gates Foundation.

Their stated goal is to identify common themes of stillbirths and preterm births and identify opportunities to advance our understanding of this global public health crisis. This effort is a collaborative undertaking by multiple investigators from around the world who have specific investigational expertise in countries heavily impacted by preterm labour and stillbirth.

Welcome to our new Parent Advisory Committee Members:

A special welcome to Claudia and Alfredo who have recently joined our Parent Advisory Committee (PAC)
 

Claudia Ravaldi, co-founder with her husband Alfredo of the Italian stillbirth support organization, CiaoLapo Onlus. Claudia is the mother of three babies Giulio (2003), Lapo (stillborn 2006) and Guglielmo (2007). She is a psychiatrist and psychotherapist, mainly working in the fields of eating disorders, anxiety and depression. She is also the author of several international articles and book chapters on psychiatric issues. After the stillbirth of Lapo, she decided to apply herself mainly to the field of grief, beginning the study and the clinical application of validated international protocols for perinatal grief support. Unfortunately, in Italy very few hospitals offer a structured service for parents' grief, so she decided to create with her husband a charity organization to spread the culture of perinatal support in Italy and to directly offer free psychological support to bereaved parents.

Assistance for bereaved family members

Mother and Father's Day

To our parents -- Mother and Father's Day* are reportedly two of the toughest days after the death of a baby or child. The confusion by many family and friends about whether you are a parent if your baby died, complicates this time. We suggest you remember that you are a parent who has suffered the ultimate a parent can experience, the death of your child. Whenever you approach this special day, do nice things for yourself and your partner to honor your parenthood and remember all of your children.
*We are aware that Mother’s and Father’s Day come on different days in each country. Many celebrate Mother's Day in May - the US, Australia, New Zealand, but many don't. And some celebrate Father's Day in June - the US and England, but many don't. Please use the information in this article whenever it is appropriate for you and your community.

When we found this nice article on the Trisomy 18 website, we asked for permission to reprint it. Please know that although it mentions Trisomy 18 and only mothers, we invite you to read it as the loss of a baby for any reason. Of course, we also want our fathers to know that we recognize many of the needs and feelings are the same, so Dads, you are included, too.

Our hearts go out to any bereaved parents who find either of these days difficult this year. Make plans for 'your' day, tell others what you wish to happen, and remember -- You are a Mother; you are a Father. Your love transcends time, birth, and death.

Helping a Loved One cope with Mother's Day

After having lost a child to Trisomy 18 or for any other reason, Mother's Day can be a difficult time, particularly the first one. In a recent online survey of grieving mothers, over half of the mothers surveyed considered Mother's Day to be their most difficult holiday.

If she has no other living children, others may overlook the fact that she is still a mother. If she does have other living children, others often don't realize that the absence of one of them on this special day can make the day bittersweet. Those around her often don't know what to say or do, and as a result usually say nothing, which usually makes it worse.
So what can you do to help?

Help her plan ahead. Although some say that “expecting it to be a hard day” is creating a self-fulfilling prophecy, it really is better to have a plan. Waiting to see what will happen usually results in a difficult day that could have been made easier with a little foresight. Realize that the day is likely to have its rough moments and plan ahead.

Many moms find that doing something special for their missing child (whether in private or with family) gives them the ability to make it through the rest of the day because they know they haven't “forgotten” their absent child. Ask her ahead of time if she would like you to participate in or help plan a special remembrance for her child. It also helps for her to have an “escape plan” if she just can't hold it together during any gatherings. Offer to deal with any explanations that are needed if she needs to escape.

Be sure to acknowledge her child in some way on Mother's Day. Some suggestions are a card, a hug, a remembrance gift, a donation in her child's name, visiting the gravesite and leaving a small gift, but mainly just be sure to let her know that you are remembering her child on that day.

Some mothers, knowing that their church has something special planned for mothers that will not include them, choose to worship somewhere else or not attend services at all. If that is the case, perhaps you can speak to the minister ahead of time so things can be modified to be appropriate for all mothers. There will surely be other mothers in similar situations who would also appreciate them sensitively handling the situation.

And if you plan to get any type of Mother's necklace or bracelet for her (or Grandmother's items for her mother), be sure to include her absent child as well. The pain of not having her child with her is intensified when others seem to “forget” her child in items such as this.

Finally, let her know that even though her precious child is not with her physically, she is still his or her mother and her child loves her very much.
Reprinted with permission from the Trisomy 18 Foundation- www.trisomy18.org  

The following two articles are contributed by SANDS, Queensland, Australia

Father's Day

Every father believes in his role as protector of his family. He has been assigned the job of fixer and problem solver. He has been told since his youngest days that he must be strong and must not cry.

But each father among us had to face that point where no amount of fixing, problem solving and protecting has been able to stop our child's death. And, inside, we must ask ourselves about our failure, and we must face our lack of omnipotence.

Father's Day if often a forgotten holiday, overshadowed by the longer-standing tribute to mothers. But for the bereaved father, it is a poignant reminder of bitter sweetness: sweet in the memory of a loved, now lost, child; bitter for the death and pain and recognition of inability to stop what happened.

Fathers do not often have a chance to share their hurts and concerns. Often times they are unable to do so, a remnant of childhood learning about the strength and stoicism of 'Big Boys'. A father may even be uncomfortable opening up to his wife, and the wife who pushes him to talk may be pushing him too hard.

Father's Day does not have to be a time when everyone pours out of the woodwork to say, "I'm sorry we haven't talked. Let's do it now." But it can be a time when the family gives Dad a hug, does something special, helps with the chores, and mostly, lets him know how important and needed and loved he is. It is some of there things that he has lost with the death of a child. And, like Mother's Day, the day set aside for father does not have to be limited to a certain Sunday. It can be any day and every day.

Fathers often show their hurts differently, often internally. BUT THEY DO HURT.
By Gerry Hunt
(Aug/Sep 2000 The Compassionate Friends )

DADDY'S GRIEVE TOO

It must be so hard on you to be a Dad who grieves,
When real men don’t cry or become upset
Only women do you are told to believe.

Your dreams are gone,
Your future has changed
Your wife is just not the same,
You hold your head as high as you can
And play your part of the game

Your heart just tells you differently,
It aches and hurts you so,
When will someone give you permission
To let your emotions show?

They ask you how your wife is,
Ignoring the fact you hurt too,
You answer the question but always wonder
When they will ask about you.

Keep the memory alive of the child you love
And your love will always shine through.
And maybe one day this world will know
That Daddies always grieve too.

Sands TAS June 2001
 

International Stillbirth Research Alert

The ISA Website is continuing to develop, with a focus on providing a comprehensive resource library on stillbirth for both professionals and parents. The International Stillbirth Research Alert is a new addition to this growing database.

The Research Alert is a quarterly update on the international research being conducted on stillbirth. Collaborating with the Australian and New Zealand Stillbirth Alliance for this project, the aim is to provide a plain language summary of recent key papers being published that are relevant to our cause.

Visit the ISA Website at www.stillbirthalliance.org  and click on ‘ISA Stillbirth Research Alert’ under ‘Research’ to find the first issue. Coming soon: Alerts from January through to March and April through to June. Any comments, queries or suggestions for the Research Alert, please email:

elizabeth.flenady@stillbirthalliance.org

Australian and New Zealand Stillbirth Alliance – Website Now Up and Running!

The Australian and New Zealand Stillbirth Alliance (ANZSA) is one of the International Stillbirth Alliance’s Regional Offices.

It is an alliance of organisations and individuals focusing on stillbirth prevention through conducting high quality research and supporting evidence based maternity care. ANZSA has recently developed an educational program for clinicians on perinatal mortality audit and immediate support for parents using the SCORPIO method. To find out more about this and ANSZA, their aims and achievements, and their collaborative organisations, please visit their new website at www.stillbirthalliance.org/anz

 

“From My Heart” fundraising campaign

International Stillbirth Alliance relies solely on donations to support our programs and services.
This Mother's or Father’s Day please consider honoring a special mother, father or baby by supporting our “From My Heart" fundraising campaign. ISA is honored to partner with Naomi Arnold, a contemporary pianist, composer, songwriter and singer. For each donation of $100.00 or more you will receive a copy of Naomi’s CD “From My Heart”. This beautiful compilation includes songs that Naomi has written and dedicated to her stillborn children, Brady and Danielle. It also includes a truly inspirational song of hope entitled “Not Again.” To learn more about Naomi and her music, please visit http://www.musicbynaomi.com  

Make a donation now

Please Join iGive …an online shopping mall that enables you to support ISA through your on-line purchases. Registration is FREE and Secure. Simply log-on and designate ISA as your charity, and from .4 - 26 percent of your purchases (depending on what you buy and as determined by the participating on-line stores) will be automatically donated. Click here to join: www.igive.com/ISA

Each issue of ISAQ will include an interview with an ISA founder, Board member or Committee member. We welcome suggestions.

…Vicki Flenady
ISA Board Chair, and Australian and New Zealand Stillbirth Alliance (ANZSA) Vice-chair, Perinatal Society of Australia and New Zealand Perinatal Mortality Group Co-chair, Acting Director of Centre for Clinical Studies, Mater Health Services, Brisbane, mother of four children.

International Stillbirth Alliance Quarterly: Thank you for making time to talk with us, Vicki. Would you begin by telling us how you came to be involved in ISA—what is your personal connection to your work?

Vicki Flenady: After a 15 year background in nursing and midwifery, I naturally fell into neonatal intensive care at the Mater Mothers’ Hospital in Brisbane , Australia . The six years I spent in neonatal intensive care triggered a passion for perinatal mortality research. I would watch parents lose a loved one and I felt helpless. I wanted to help reduce the stillbirth rate in Australia , a developed country which should have the medical capacity to do this. In 1999 I completed my Master of Medical Science in Clinical Epidemiology and Biostatistics. While I am currently the Director of the Mater Research Support Centre and Centre for Clinical Studies (where a number of exciting projects exploring reduced fetal movement, autopsy consent, and smoking cessation are underway) I am also in the process of completing my PhD on the epidemiology of unexplained stillbirth in Australia . Even though I am researching into reducing stillbirth in Australia , I also recognise that this is a global health problem with developing countries carrying the largest burden.  If we truly want to tackle this international health issue we must approach it collaboratively, globally and with a dedicated team of health care professionals and researchers and parents. I feel very proud to be a part of ISA in its mission to achieve just this and I acknowledge and thank the founding members of ISA for their insight and wisdom in making this rational and vital global approach a reality.

I was first invited to join ISA in 2004 at the first annual conference in Washington . I was thrilled to be a member of the Scientific Advisory Committee as I could voice Australia ’s research position and contribute to the global effort. I soon became a member of the Board and at the ISA General Assembly in Birmingham last year I had the privilege of being voted Chair of ISA.

ISAQ: What do you think are ISA’s strengths?

The most wonderful thing about ISA is the fact it brings people, from all different parts of the world, with varying knowledge, experiences, and ideas together as one organisation, with a common goal – to reduce stillbirth throughout the world. We have two focuses within ISA - improving research through the ISA Scientific Advisory Committee and understanding bereavement processes and assisting parents to link it with local support and find the information they need through the Parent Advisory Committee.

I believe the most important aspect in the success of ISA is our annual Conference. These conferences are an important time for all parent and professional member organisations to gather together and explore the priority activities of ISA in reducing the global burden of stillbirth and to improve care for parents when their baby is stillborn. It is through this face-to-face, personal communication, and joint, cooperative efforts that ISA can move forward, and achieve our organisational goals.

To date, these conferences have been very successful with outcomes achieved in both the scientific and bereavement strands. Most recently at the Birmingham Conference, the Parent Advisory Committee was able to establish firmer links with organizations across the world. This Committee is now in the process of developing a series of “Ten questions to ask your health care provider" for parents which have an international perspective. These will soon be available on the ISA website. Another exciting outcome from this conference is the establishment of a Developing Countries Committee. This is in its early stages but will concentrate on creating awareness and reducing the rate of stillbirth in developing nations.

From a scientific perspective, the opportunity to place experienced researchers in the same room is invaluable to the progress of understanding stillbirth. It allows for researchers to discuss, learn, expand and understand. Not only this but it promotes more efficient processes in research including the crucial work that needs to be done to improve data quality around identification, classification and investigation of stillbirths. The recent establishment of ISA’s first regional office placed with the Australian and New Zealand Stillbirth Alliance (www.stillbirthallinace.org/anz) is testament to the success of ISA.

Essentially, the existence of ISA helps people globally to achieve their perinatal mortality goals.
 

Reducing the Risk of Stillbirth

The Australian and New Zealand Stillbirth Alliance (ANZSA) in collaboration with ISA are conducting a comprehensive literature review of stillbirth covering the following areas: causes and risk factors for stillbirth; antenatal prediction of stillbirth; interventions to reduce the risk of stillbirth; value and costs of stillbirth investigation protocols; bereavement support and options following a stillbirth; classification systems for stillbirth; and models of stillbirth audit.

The first section of this review summarises the important and potentially modifiable risk factors for stillbirth in developed countries. These factors include: overweight and obesity, smoking, advanced maternal age (over 35 years). Primiparity is also an important risk factor. Women who have had a previous perinatal death are also at higher risk of stillbirth in subsequent pregnancies. Previous caesarean section may also increase the risk of stillbirth however this finding requires confirmation in further well designed studies.

Prolonged pregnancy is also a modifiable risk factor for antepartum stillbirth, which affects about 1 per 1000 on-going pregnancies at 41 weeks, 1 in 500 at 42 weeks and 1 in 200 at 43 weeks. These risks can be avoided by routine induction post-dates.

ISA and ANZSA are currently collaborating in raising public awareness of the modifiable risk factors for stillbirth.

As the majority of otherwise unexplained stillbirths are related to placental dysfunction and are associated with fetal growth restriction, further research is needed into methods of screening women as a part of routine antenatal care to detect those at increased risk and to also clarify the best management strategies for women who screen positive.

The review was made possible by the Stillbirth Foundation and the Department of Health and Ageing Canberra, Australia. A major resource for the review is the recent paper published in The Lancet by Gordon and Fretts. The final report will soon be publicly available. However for further reading in the meantime (including source references for the above facts) please see: Gordon CS Smith and Ruth C Fretts. Stillbirth. The Lancet 2007 – Volume 370, Issue 9289, 17 November 2007 , Pages 1715-1725.  Please contact the secretariat for further information: vicki.flenady@stillbirthalliance.org

letters

Some People Just Get It

On the passing of my dear friend, Pastor Paul, I wanted to share a special story.

As we did every year for the past eight years, we put flowers on our church alter in memory of our son Matthew. We remember him every day, but it’s nice to know that everyone in church will think of Matthew too, if just for a brief moment. After our Sunday service, Pastor Paul approached me and said how sorry he was to learn about the loss of our son Matthew. As a fairly new Pastor to our church, he was just getting to know members and had no idea we had a child who died. He expressed his deep sadness and said that when he saw Matthew’s name in our church bulletin, he asked our secretary what had happened. I was so touched that he would take the time to find out about Matthew.

A few days later, on Matthew’s April 30th birthday, I received the most incredible message from Pastor Paul – words I will never forget. “Monica, hi this is Pastor Paul. I know this is a very difficult time for you and your family and I wanted you to know that you are in my thoughts. If you would like to talk “…there was a long pause and he continued “or if you would just like to vent, please know that I’m hear to listen”. I played the message over and over again. Pastor Paul GOT IT! Venting was exactly what I wanted to do. It had been eight years and yes, I still wanted to vent. What a revelation this was! Not only was it okay for me to vent, but I had found someone who wanted to listen.

I never did call him back. I didn’t need to. Just knowing that he understood meant the world to me. I will be forever grateful to Pastor Paul.

I sincerely hope you all find some peace this Mother’s Day. But if what you need to do is VENT – please know that’s okay too.

Moni Ryczek
Co-founder
International Stillbirth Alliance

Hello
I am sending the text of a song written by a CiaoLapo member for your newsletter.
The song is in memory of Sara, daughter of Diego and Michela, who died of a severe malformation of CNS. Diego is the singer and musician who wrote the song, originally in Spanish language. We really love it and we would like to share it with all the people of the mailing list.
Here you will find the original text in Spanish and an English translation.

Soy Meteora
by Diego Deza
(English translation by A.Vannacci and M.C.Forrest)

The song can be heard on our websites, both on the Italian ( www.ciaolapo.it ) and the international one ( www.ciaolapo.eu ), and the mp3 can be downloaded from this link download Soy Meteora. For contacts and information use info@ciaolapo.it.

The website of the author, Diego Deza, is http://www.myspace.com/solodeza (note that his style is quite different from this lullaby ballad, he usually plays some kind of latin/progressive blues-rock).

The song is copyrighted and we are authorized by Diego to use it and share it, as long as we acknowledge the author).
 
Thank you for all,

Alfredo Ravaldi
Cialapo

In other news…

The Parent Advisory Committee new project

The Parent Advisory Committee has been working on a new project. We have three committees working to create a list of rather generic questions that parents can use with their medical care providers. Those three areas are:

1. When pregnant - things to watch for to help have a healthy outcome
2. Shortly after your baby dies - autopsy results and reviewing what happened
3. Subsequent pregnancy - trying again and when parents are pregnant again

October is Pregnancy and Infant Loss Awareness Month

We are offering and encouraging our brothers and sisters throughout the world to join us in making each October -- Pregnancy and Infant Loss Awareness Month.

For over 20 years, the US has been using this entire month to build support, education, and awareness to aid families who have had a baby die due to miscarriage, stillbirth, or early infant death and their care providers. For much longer, the SIDS community has also used this month for those whose babies died of SIDS. Other countries have joined us to make this a unified venture.

Please consider joining us by doing something special in your community during the month as we all link up in our efforts to improve the world -- one family at a time.

Some possible ideas are:

A Walk to Remember, a Memorial Service, an educational/training event, writing press releases for the paper with families' stories, a walk/run fundraiser, a special dinner or dance, and more.

One special event created specifically for the entire world is the October 15 Pregnancy and Infant Loss Awareness Candle Lighting ( www.october15th.com ). Light candles from 7-8 p.m. in your time zone to honor these special babies, and we will have a 24 hour remembrance that sheds light and hope as it travels around the world.

Tell us what you do and we'll put it on our website. If you need help with ideas or press releases or even training tips, keep checking our website under October Awareness Activities.

SIDS 10th International Conference, 23 - 26 June 2008
Portsmouth, UK

Final programme now available on web site www.sids2008.org.uk

The programme includes:

• Gene/environment interactions

• Focussing on vulnerable babies

• Interplay between pathology and clinical assessment

• Interagency working around the world

• Factors influencing the uptake of 'Reduce the Risk' advice

• Bereavement care - Responses to diversity

• Infant care and environmental factors

• Bereavement care of parents, children and staff

These are subject to change before the final printed programme.

Visit the web site to register online
Forward this email to your colleagues
Latest information on programme, speakers, social events, registration on line

Visit www.sids2008.org.uk

Hosted by the Foundation for the Study of Infant Deaths on behalf of SIDS International

International Society for the Study and Prevention of Infant Deaths (ISPID).