by Nicole Ballinger

Having Pregnancy and Infant Loss Remembrance Day declared across Australia came one step closer to reality this week. My husband and I were the guests of our MP, Mrs Joanna Gash, to witness this historic debate.

But actually, there was no debate to be had.

Just as in the State (NSW) Parliament last Oct. (read more), this week there was uncontested and passionate support from both the majority government and its opposition re the official recognition of October 15th as Pregnancy and Infant Loss Remembrance Day. 

One MP after the next expressed that losing a baby either to miscarriage, stillbirth or perinatal causes is commonly experienced, yet bereaved parents tend to grieve in silence and alone.

Tears were shared, and members of both sides hugged and empathised with one MP in particular -- whose grief was triggered, 26 years after his premature baby’s death. All in all, it was a very touching and moving 20 minutes of history, to say the least.

For now, the matter has been adjourned. But with such uncontested support we at PILARI are confident that this day will be officially declared in the near future. Together with our MPs, we will continue to ‘fight the good fight’ until this day is declared. And we thank you, our readers, for your ongoing support.

Highlights from this week's Hansard:

“In terms of the impact of the event [pregnancy and infant loss], you need to factor in fathers, grandparents, aunts, uncles, and even friends and workplace colleagues. For all intents and purposes, this is post-traumatic stress disorder… This proposal for a pregnancy and infant loss remembrance day is not just a sentimental gesture; there are clinical and therapeutic benefits to be had” – Joanna Gash MP (Member for Gilmore; Liberal Party)


“Men feel it deeply as well… it is something that a lot of people experience. In many cases they remain silent about it, but it is very useful for people to be able to share their experiences with each other and to know that you are not alone in your grief, and that it continues for much longer than you think” – Sid Sidebottom MP (Member for Braddon; Australian Labor Party)

“There was no encouragement of photos, flowers, a service for the naming of the child. No doubt that led to more grief and a wondering if the mother and father – and perhaps the brothers, sisters and grandparents – were the only ones who really cared … We have got to make sure that we do all we can to support families … in those circumstances. There is no doubt that grieving together, identifying your loss and having the community understand your loss must help in the grieving process” --  Dr Sharman Stone (Member for Murray; Liberal Party)

“Last year I watched one of my best friends carry a small white coffin in his arms… his daughter had died in utero…. My friends recently wrote to me: ‘Every phone call, every message, or simple gesture recognising our daughter as part of new lives helps us move forward in our grief. Last year, we participated in our first International Pregnancy and Infant Loss Day and Walk to Remember. Friends, family and the greater community all coming together to remember and honour the far too many babies’ lives lost. IPIL Day enabled us to feel the love and support of our wider community again’.” -- Mr. David Bradbury (Member for Lindsay, Australian Labor Party)

To see the entire parliamentary Hansard  -- 4 quick speeches and a real page-turner -- Click here

By Nicole Ballinger

If your baby has died through miscarriage, stillbirth or neo natal death, you have our sincere condolences. Here at PILARI, most of our contributing authors have all shared this same tragedy: we know, first hand, how shattering this grief is. You are no longer alone.

Please feel free to explore our website: it’s brimming with ideas, wisdom, support and resources for people who have experienced pregnancy and infant loss. New articles are submitted to this website frequently.

But you may feel you need to meet other bereaved parents, too. Many parents have found that they overcame their grief more quickly by joining support groups.

There are groups for survivors of pregnancy and infant loss across the world. Some of the newest are in Australia, run by Bears of Hope. This charity already runs groups in Sydney, Dubbo and the Hunter Valley NSW. In 2010, their first group will start in the ACT.

Amanda Bowles and Toni Tattis  are the Directors of Bears of Hope. They have also lost babies, so they too understand the depth of shock, disbelief and sorrow. I met these dynamic women recently, and was impressed by their tireless efforts and their dedication to helping others.

Bears of Hope also helps friends, families, doctors and other professionals who care about grieving parents. The loss of a baby affects many people, typically creating feelings of hopelessness and powerlessness. So when a baby is lost to our friend, family member or patient, we often wish we could do something to help them, somehow.

Now we can. As a charity, Bears of Hope accepts donations that go directly to helping bereaved parents. You can help by: making a donation; purchasing an inexpensive teddy bear (that Bears of Hope will send as a gift to grieving parents); or by attending their annual charity ball.
 
To find out more, visit their website. Thank you for caring.

By Nicole Ballinger

“The only cure for grief is action” -- G. H. Lewes, Psychologist

Last Friday I got a phone call from author, Helen Abbott. Helen read here about the momentum being gained for Pregnancy and Infant Loss Remembrance Day to be officially declared in Australia. As an Australian, she contacted us to see if she could help to bring this Day about.

Having survived the tragedy of losing a baby (stillbirth), Helen also told us that she is writing a new book. So we asked her if we could help her, in return.

Helen’s book will present personal stories of strength, hope and recovery from people who have lost a baby during pregnancy. Her book will help both the recently bereaved, and those of us who lost a baby some time ago.

Like this website, Helen’s book helps to give us a 'voice' -- enabling us to further break our silent gref.

It’s been my experience that  every time I share my story, I not only help others but I continue to grow in my own recovery. Helen’s book presents another opportunity for us to help others, while also helping ourselves.

Helen has made this very easy with a simple, online questionnaire. Our privacy is maintained: each participant's questionnaire will have no personal identifying information connected to it, in Helen's book.

I filled in the questionnaire, and I must say that she posed some fascinating and heartfelt questions I've never been asked before. So while I've spoken with many people about my experience with recurrent miscarriage, this new questionnaire was a very healing exercise, too.

We welcome you to consider taking this questionnaire: it doesn’t take too long, and the rewards of reaching out (even in the privacy of our homes) are immeasurable. Read more

By Nicole Ballinger

“In my opinion this is one of the most important motions to be debated since my election” - Dr Andrew McDonald MP (NSW Labor Party) and paediatrician.

“Miracles do happen!” announced my MP, Shelley Hancock (NSW Liberal Party). I saw Shelley again last Sunday, when she supported a bereavement service: honouring babies who died through miscarriage, stillbirth or some time after their birth.

The ‘miracle’ was the unanimous vote in the NSW Parliament on Oct.22: calling on the government to consider declaring Pregnancy and Infant Loss Remembrance Day across Australia’s most populous State.

Shelley said it was the first time she’d ever seen a unanimous vote, in all her years as our MP.

She added that MPs were wiping away their tears, during the discussion.

“Often the Government or Opposition opposes a motion moved by a member on the other side of the House for no good reason other than that we are on different sides of the political fence, “ said Shelley. “However, on important issues…we come together.”

And the unanimous vote was a surprise.

Members from both parties spoke with equal passion in favour of declaring this Remembrance Day.

Dr Andrew McDonald MP spoke about this tragedy amongst his patients. Grant McBride MP spoke emotionally about the loss of his own baby 25 years ago. Grant said, “it’s such a personal thing that it never leaves you”.

Read more here – it’s fascinating!

by Nicole Ballinger

‘Remembering Our Babies' is a special memorial service for mothers, fathers, grandparents, siblings and friends who have ever suffered from the loss of a baby or infant through miscarriage, stillbirth or any other cause.

Time does not always heal the pain of loss, but acknowledgement and support from others can certainly help. A memorial like this can offer support to those who have suffered such a tragic loss of life.

Losing a baby can be such an isolating experience: a silent grief. So coming together can do a lot to help with the healing process.

“As we’ve talked to people about this day, we’ve become aware that some folk were never able to properly grieve. The aim of our service is to acknowledge how deep and profound the loss of a child can be and offer support, encouragement and hope”, says Rev. Geoff Deutscher

Please join us for this special service of remembrance, followed by afternoon tea.

In the beautiful Shoalhaven area of NSW. White sands, green hills, surf beaches and pristine lakes. And just an easy drive from either Sydney or Canberra. So why not come and make a weekend of it, and join us for this special service?

Details:

• 2 pm, Sunday 1st November
• St Martin’s Church:  at the corner of Princes Hwy and Green St, Ulladulla, NSW
• Karen Deustcher on (02) 4454 2030 or by email at  Office@Ulladulla.Anglican.asn.au

By Terra-Lynn Coggan

The "Lights of Love" International Wave of Light is a  "Bear Care Campaign” initiative. This event sees people  from around the world participating, starting at 1900 hours on October 15th in all time zones.

Participants begin lighting their candles at 1900 hours and are asked to burn them for at least one hour. The result is a continuous chain of light spanning the globe for a 24 hour period, in honour and remembrance of our children.

Candles can be lit individually or in groups, in your home or in a community setting. Wherever you are, you will be joining a international wave of light in memory of all the children who have passed away during pregnancy or shortly after birth.

Spread the love and send a bear hug to your family and friends and ask them to join you on October 15th at 7:00pm to light a candle in honor and remembrance of all families who have loss children during pregnancy and shortly after birth.

People around the world are welcome to visit The Bear Care Campaign to add the name and date/s of the child/ren whom you'll be lighting a candle in memory of. If you have a memorial website for your child that you would like to share you may post the url as well. If you have a photo you would like to share it can be posted in the photo section.

To learn about the Bear Care Campaign's 5th Annual Lights of Love International Wave of Light visit the link below.

By Nicole Ballinger

According to CBC News (Canada) yesterday, a reported 13 million babies are born prematurely each year worldwide, and one million of them die.

 

The March of Dimes Foundation aims to improve the health of babies, and presented facts about premature births and the consequences, based on data from the World Health Organization (WHO).

 

More than 10 per cent of births in North America -- or 500,000 babies -- are preterm: that’s up 36 per cent since the mid 1980s. Africa had the most preterm births, at 12 per cent.

 

The causes are very different geographically, according to Christopher Howson, vice-president for global programs at the March of Dimes in Washington.

 

Poor conditions and lack of health care are to blame in Africa. In North America, the benefits of medical advances and improved health have been offset by the rising number of women over age 35 having babies, and the increasing use of assisted reproductive technologies that result in multiple embryos being implanted.

 

Women carrying twins or more, have a six times greater risk of having a preterm baby than a woman who's carrying a single baby, reports Howson.

 

If they do survive, preterm babies are more likely to have problems such as:

• Developmental or behavioural issues

• Learning disabilities

• Cerebral palsy, and

• Respiratory illness

The largest proportion of the increasing preterm birth rate in North America is a result of late preterm births — babies born after 34 weeks of pregnancy.

 

Until recently, it was thought the late preterm babies weren't a cause for a concern, but that has changed.

 

The statistics show that late preterm babies face higher rates of re-hospitalization, jaundice and delayed brain development, Howson said. "So there’s a risk with being born even just a week or two weeks too soon."

 

The 13-page report from March of Dimes aims to raise awareness of the dangers of preterm birth. It calls for more international co-operation, public health measures to improve the health of babies and mothers, and more funding to make those things happen.

 

The group plans to follow up with another report in 2010, suggesting more specific strategies to reduce the deaths and disabilities associated with preterm births.

 

 

By Nicole Ballinger

A test that could reduce the risk of pregnancy loss is now under development.
 
Researchers at the University of Adelaide (Australia) are developing a new, genetic test that can predict which women are at risk of having pregnancy complications. The test could help pre-empt potential risks and lead to tailored, pre-natal care.

Associate Professor Claire Roberts said her team’s findings show "that it does actually take two for a successful pregnancy".

"Pregnancy success is determined by a complex interaction of maternal, paternal and environmental characteristics that together dictate how well the placenta develops and functions and how the mother adapts to pregnancy," announced Ms Roberts.

Common pregnancy complications -- ranging from miscarriage, preterm birth and foetal growth restriction – are linked to defects in how well the placenta develops and functions, Ms Roberts added.

"The problem with complications is that we have been unable to predict which women are at risk until symptoms develop, and then therapies can be too little, too late."

This new test could change all of that.

The team at PILARI will closely follow developments with this new test, and provide updates here on this website. Stay tuned!

By Nicole Ballinger

Bereaved parents understand that pregnancy and infant loss is a confronting thing for others to find out about. We know because we remember how awkward it was for us to handle (when someone we knew had lost a baby) before the same tragedy befell us. We, too, searched for the ‘right thing to say’. We, too, were at a loss for words. So to our family, friends and professionals: we do know you mean well, even if the words don’t seem to come out right.

I recently attended a special forum held by my local chapter of the Compassionate Friends. This world-wide charity helps bereaved parents, who have lost a baby or child at any age, for any reason (read more here). The guest speaker was the wonderful Deborah England, who holds a masters degree in analytical psychology, and has an extensive background as critical care nurse. Today, she is a highly skilled counselor who specializes in helping people cope with grief and loss.

Deborah reminded us that the loss of a baby or child is disenfranchised, not socially sanctioned, and even invalidated. But this is because, in Western society, we are not socialized about how to handle such heart-breaking news. We humans are not at fault: we’re simply ill-equipped.

Due strictly to social taboo then, bereaved parents feel isolated -- and the rest of society feels uncomfortable. When a friend, family member or patient suffers from miscarriage, stillbirth or postnatal loss, we want to help them – but we’ve never been taught how. As a result we often feel at a loss for words, yet at the same time may find ourselves mentally scrambling for the right thing to say. Try as we might to find them, we realize that it so often comes out wrong. Grieving parents eventually all understand this struggle.

Deborah reminded us that since there’s not much we can do as individuals to overcome social taboo, we bereaved parents are best off looking within to find solace at these times. Deborah suggests that it’s best to always keep in my mind that though the words often come out wrong, the speaker's intention was good. Deborah provided us with a great "tool" for coping with these situations: a way to turn for comfort inward, as well as to show our gratitude for the other person’s love. Read about the tool here.

As a special message to our loved ones and the professional out there, please remember that the only "right" words are: “I’m sorry.” All of us at the forum agreed on that.

Thank you Deborah, for your kindness, wisdom and generous support. You’re making a big difference to bereaved parents, and (by extension) to those who care about them.

By Nicole Ballinger

Recently, I had the privilege of speaking with the midwives at our largest, local hospital. My articles had caught the eye of one of them, who invited me to speak about my experiences, and to offer any tips or fresh ideas.

Unlike so many members of the public, midwives are well aware of how tragically common miscarriage, stillbirth, neo natal death and early parental grief are. But most of these midwives didn’t know about some useful, free and readily available resources – like this website, online blog boards, and local support groups. What a surprise: I enlightened the medical professionals, for a change!

We had a lengthy discussion: providing them with additional resources, a question and answer period, and tips. The main tip was a simple one: they seemed humbled, even enlightened by my layperson’s suggestion: that despite their creative efforts to find “the right thing to say” to grieving parents, well…really, the only helpful words are a sincere "I’m sorry”. They thanked me for visiting them, and for my time.

After the devastation of losing one baby after the other, today I have recovered from my grief and am able to be useful to others. I am also honouring my lost children, and I take comfort in knowing that they did not die in vain.

During the course of our meeting, the midwives learned that I had entered their hospital via the emergency unit (when we lost our first baby). At this point, they realized the true scope of the problem: that pregnancy and infant loss would be taking place in other areas of the hospital too – not just in their wing.

They asked me if I was willing to come back and speak with staff in their emergency and day surgery wards, too. I smiled. Are you kidding?! Bring it on!