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ISA and ISPID Joint Conference

ISA and ISPID Joint Conference

From Friday 8th to Sunday 10th October 2010, the Bears Of Hope Committee took part in the International Stillbirth Alliance (ISA) and International Society for the Study and Prevention of Perinatal and Infant Death (ISPID) joint conference, held in Sydney.

The conference offered a large variety of seminar style sessions in which we were able to attend and as a result, learn a great deal from some very dedicated professionals in the areas of miscarriage, stillbirth, infant death (including much information on SIDS/SUDI -Sudden Unexpected Deaths in Infancy) as well as grief and bereavement support.

Before the opening address ceremony of the conference, Bears Of Hope had a very fortunate opportunity to personally meet our Governor General of the Commonwealth of Australia, Ms Quentin Bryce AC. We were able to offer Her Excellency our very own Sophie Bear. We felt extremely privileged for this very rare opportunity.

You can read our Governor General's opening speech for this conference here

Being an international event, we were able meet a vast array of people from all over the world including the U.S.A., Singapore, Argentina, Italy, The Netherlands, Ghana, the U.K., Ireland, New Zealand, and all parts of Australia, just to name a few.

We were privileged to meet Nurses, Midwives, Professors, Support Group Organisations, Obstetricians, Groups involved in Prevention of Infant Death (such as Bill and John from the U.S. who have developed Halo – a safer sleeping bag option in preventing SIDS), Social Workers, Researchers, Counsellors, Psychologists and Bereaved Parents.

On the Friday evening, we attended the Memorial Ceremony; a time for us to remember and honour all the little babies who lived ever so briefly. We were touched by the Sids and Kids choir who sang many beautiful songs and those who read poetry. We all had the opportunity to write a message to our babies and light a candle, which was displayed out the front of the room. Bears Of Hope were also very fortunate to have our newly released song, Live Among Angels, played at this ceremony.

Bears Of Hope had an information table set up so that people could come over, look at our program’s resources, ask questions and learn more about what we, as a support organisation, are trying to achieve. The feedback we continued to hear throughout the entire conference was very often the same comments...... “you are doing such a great job. I only wish we had a program like this where I live”.

We have highlighted some of the seminars and findings which may be of interest below:

Dr Joy Lawn was one of the first presenters on the Friday who provided some interesting information. Her findings found that the rate of stillbirths in 1983 was 58 per 1000 births, and then in 1996 it had dropped slightly, but not significantly, to 53 per 1000 births.

Today, worldwide there are approximately 19,000 stillbirths every day (99% of these occurring in low-mid income countries). Simply a tragic statistic. Still, there are babies dying uncounted, hidden by social taboos.

It is hard to believe but despite that there are so many lives lost each year, the issue of stillbirth and miscarriage are not even mentioned in the United Nations Millennium Development Goals (MDG). They were not mentioned in 1997 when the MDG were developed and they are not mentioned today. The MDG are an international plan of action that aims to significantly reduce the level of misery and suffering experienced everyday by millions of people. (http://www.developmentgoals.com/)

Ros Richardson (SIDS NSW) gave a very insightful presentation about the “Parent’s perspective across stillbirth and infant death”. Part of her survey findings dealt with what parents found most helpful during their grieving journey. The majority of families agreed on a number of factors including: Time; Support; Normalising and Having Purpose Each Day (eg: meeting others/feeling less alone) and ; Honouring their Children and Making Memories (eg: visiting graveside, creating photo albums).

She also presented what parents found least helpful. I’m sure most can agree with these including: Careless Comments/Platitudes; Community Ignorance (eg: inability of people to say ‘sorry for your loss’); Isolation (including friends ignoring you, lack of follow up from hospital); Lack of Support and Compassion (eg: people expecting a quick recovery).

Parents were also asked what they wanted in terms of support. It was found that parents 1) highly sought brochures 2) wanted to attend groups 3) wanted to receive newsletters 4) wanted online support 5) wanted books on how to deal with their loss 6) wanted counselling 7) Peer support groups with telephone support the least likely to be used.

Katherine Gold also presented some interesting findings based on a survey she conducted about the role of internet support groups following a loss. She started by noting that internet support groups are by far the most beneficial as rated by bereaved parents, with telephone support services rating much lower. Her key findings demonstrated that there was a need for support even after 20 yrs or more following a loss.

In terms of looking at preventing stillbirth, Professor Vicki Flenady highlighted that approximately 50% of women experienced a decrease in fetal movement prior to the stillbirth and that often more than 50% of women waited 24hrs before consulting a medical professional. These findings may suggest the increased need to educate mothers about the importance of acting quickly upon any fear there is something not quite right with their baby. It was encouraging to hear that the International Stillbirth Alliance Parents Advisory Board are creating an informative website where parents can turn if they have any questions or concerns during their pregnancy as well as a place to turn in the tragic event of a stillbirth. A place where parents can ask questions and get honest and accurate answers and information during a time of great importance in their lives.

Dr Peter Barr presented a session titled “Understanding Grief Emotions” where we learnt of the four main emotions that play a role while grieving the loss of a child. These include Guilt, Shame, Envy and Jealousy. He noted that 43% of people who experience grief will experience shame and that often shame is at the core of grief. Shame and guilt will also often coexist. Dr Barr presented some great strategies in helping support families through their grief and he was most interesting and knowledgeable to listen to.

An interesting seminar presented by a Midwife form Italy showed that only 80% of midwives in her country believe families should see their child following a stillbirth. There was a definite gasp of shock following this figure in the room.

Steve Younis, author of “A Bereaved Father” shared his story of the loss of his two daughters. He highlighted some of the major differences between how men and women grieve, including the common male way of dealing with loss is to stay active and keep busy (often involving the use of their hands/fixing things).

There were a number of seminars dealing with the risk factors of SIDS/SUDI. In summary, these factors included Prone Sleep Position (on tummy); Smoking (more harmful during pregnancy but post pregnancy is harmful also); Co-Sleeping with your child and; Head Covering.

Sherokee Ilse, Joan Noonan and Deb de Wilde provided some valuable information and advice on supporting families through their grief. Joyce Epstein presented her findings on a recent survey looking at the kind of information families do or do not want included in informative brochures/leaflets for a bereaved parent. While Line Christoffersen addressed the clinical and emotional needs of a mother during a subsequent pregnancy following a loss. An interested finding she discussed was that mothers who had experienced a loss before 24 weeks did not cope as well during a subsequent pregnancy as those mothers who had experienced a loss after this gestation.

One of the major underlying components that we felt also arose from this conference was the use of language and its importance in the messages that it sends our community. It was reassuring to hear professionals refer to stillbirths and miscarriage loss as the loss of a baby, and not always that of a foetus. The discourse surrounding loss is a major contributing factor to the perceived impact, noting that the foundations can lie within the written and spoken form by those in the profession. These people have the capacity to help change perceptions within the community that a loss, no matter the gestation, is a REAL loss of a BABY, and unambiguously needs to be valued as such.

We walked away with a confirmation of what we already knew was the fact... that is, there are just not enough support groups set up around Australia, let alone the world, to be able to accommodate the huge demand needed by grieving families.

Needless to say, this weekend was emotional. It was challenging at times but above all, it opened our eyes to the direction we’re headed to put the issues of miscarriage, stillbirth and neonatal and infant death on the global agenda. We have discovered a wealth of knowledge about miscarriage, stillbirth and infant death (SIDS/SUDI) and the enormous variation in statistics between countries (based on socio-economic status). And lastly, but most importantly, we have raised the awareness of our program and what we do to support grieving families. We offered a Bear Of Hope and our support to the many bereaved parents we met along the way. We have developed some fantastic and lifelong networks and finally, we have increased our knowledge and awareness on the different ways we can expand our program to provide further support to those who need it most.