Anne Gidari Sands' Older Loss Support Group Interview
Up until about the 1980s when a stillbirth or infant death occurred, the hospital did not let the parents see or hold their precious baby. The baby was taken away for a hospital arranged burial, usually in a communal grave and the parents were not told where the grave was situated.
'You were told forget about it, go home and have another. Unlike today, you were discouraged to see or hold the baby. The babies were simply taken away to be buried and parents had no knowledge of their babies resting place, no permission to grieve and may have not been even been told their babies gender." Says Joan Noonan, a Older Loss Group Coordinator. 'Without the chance to say goodbye or create memories to provide a tangible focus for their grief, many parents suffered continuing distress the way in which their baby's death was managed and how their grief was effectively disallowed". The Victorian based Older Loss Support Group, is part of Sands. It was formed in 1996 as a result of many older loss parents contacting Sands for support and help with locating their babies.
Today, the Older Loss Group, as well as providing peer support, the group helps parents locate baby's final resting place. Over the years, over hundreds of parents have found their babies and gone on to hold commemorations with friends and families across various cemeteries throughout Melbourne, as well as beautifications such as landscaping and the placement of plaques at communal graves.
Sands believes it's never too late to grieve. To learn more about the Older Loss Support Group please contact 1300 072 637 Sands is a not-for-profit organisation that provides support, information and hope to parents and families who experience the death of a baby. All Sands Parent Supporters understand the heartbreak and devastation that follows the death of a baby, as they too have experienced it. Sand also offers resources and education for healthcare professionals.
Interview with Anne Gidari
Question: Can you share your story of a little life lost due to neo-natal death, still birth or miscarriage?
Anne Gidari: 1970....My mum Ika, was a new arrival in Australia. An arranged marriage via her cousin saw my mum and dad marry within weeks of arrival. She had no immediate family/ friends in Melbourne, had left her six siblings and parents back home in Croatia. She'd travelled across the world, alone. She didn't speak English, didn't work, didn't have many friends, and lived more or less a quiet/ lonely life with my dad in suburbia. The land of opportunities. The country free of war, so I'm sure she felt the need to feel grateful, and accept the circumstances.
She was ecstatic when she fell pregnant with her first born. She and my dad looked forward to raising a big family. They were due to have their first baby and start living the dream. But it wasn't meant to be.
My mum went to full term, but began experiencing a 'something is wrong' feeling during early labour. A friend rushed her to the Sunshine Community and District hospital where her OBGYN (Dr Balabin) delivered babies. (Hospital no longer there, doctor now deceased).
My mum insisted there was something wrong. In her broken English she cried for help. She pleaded. The one piece of information my mum recounted on the odd reference to others about this experience, was that the nurses had laughed at her hysterical disposition...there was ridicule and intimidation...as they told her to shut up, keep quiet, to 'shush'. But she didn't, and presumably launched into some type of panic attack alongside her labour pain. Things were not good. My dad was at work, couldn't be contacted.
Baby was eventually delivered (my mum has very minimal recollection of any specific details, like length of labour). Baby was taken away from her. Then she became more hysterical when they told her that her son was not alive...he was stillborn. Later it was relayed to her that he had been asphyxiated by the umbilical cord, communicated to her by the obstetrician. She did not see her baby, nor was she given the opportunity to hold/name/farewell him. He was literally whisked away....which I've since been told was common practice in those days...'out of sight out of mind' mentality.
She was put in a car and driven home that evening....by the obstetrician himself, who had eventually arrived. When my dad arrived home from work, he questioned my mum as to where the baby was. She told him he was stillborn and they'd taken him away. My father made his way to the hospital to seek answers, but he too, was told, just like my mum, to go home, bad luck, try for other babies!
My mum fell ill. Nerves, panic attacks, migraines. She was put onto high doses of Valium/ Diazepam/ Xanax type sedatory type drugs to help her 'calm down'....dull the heartbreak, block the pain, help her forget. Forget?!? My mum was made to feel like a freak, crazy lady, 'sick' & dysfunctional person...which by all accounts, she probably was, with reason.
There was no follow up, no counselling, no support, from either the medical profession or from those around her.
Everyone told her to get over it, move on, have another baby. She was told it was best to forget, even by the specialists, who advised my dad to maintain that line of sensibility... which, unfortunately, he did. It became a taboo topic. It was not spoken about. There had been no live baby, so effectively, no baby at all.
She received no support and was told by my dad and the doctors to cease the medication in order to try for another baby, which sent my mother into a spin. Of course. Rightfully so! But she did conceive, approximately a year later, and I was born in 1972.
There was some level of moving on...moving forward, by virtue of not only a live birth, but also through the business of being busy, of mothering. It was the first joyous 'distraction'. 14 months later my sister was born, and that would complete my parents family. They never got the son they'd always wanted, nor the big family. That dream had gone. My mum resumed her large doses of medication...and for most of our childhood, my sister and I have vivid recollections of a mother who was sedate, slept for hours during the day, cooked, cleaned, and more or less, served. Sedated and compliant. The loving mother and wife, but one whose heart was eternally burdened and heavy, for the child she was told never existed. It was never to be spoken about, and if it was ever raised, it would send my fragile mum into hysterics all over again. Why?!? She would question....why would you bring this up?!?
And so it was...we learned, very quickly, not to breach that subject with my mum.
Until last year.
Question: What did you want someone to say to you, during the most difficult of times?
Anne Gidari: That it DID happen. There was a baby, a beautiful baby. It was not your fault. Nothing could've been done to change the outcome, they tried.
Name him, for your own sanity, say his name...he deserved that, you deserve that.
Speak about him, know that he existed.
Let's find out where he's been laid to rest....so you can have some closure. Let's find him.
What still pains you?....how can others help?....is there anything we can do?
You weren't the only one. Others went through this too. You were not crazy....you were mistreated, you had every right to be scared, to yell and cry, you were terrified and you should have been comforted, not sedated.
It's ok to cry, let's cry together.
It's beneficial to talk….talk all you want, I will listen.
I understand. I'm here for you.
You don't need so many drugs...you're grieving, you're not crazy.
Question: How did SANDS AUSTRALIA's Older Loss Support Group help?
Anne Gidari: I embarked on this journey last year in part for closure for my ageing mum, but also for myself.
It had always pained me, and as a mother of four, I felt that it was the very least I could do, as a mother, for my mother. I felt it was almost an obligatory passage for me at this stage of my life to seek answers on her behalf. My mum deserved that. I was persistent. We live in the digital world for goodness sake, there was evidence to be found, I just had to navigate my way through the red tape. I was adamant that it was time to put my brothers memory to rest, once and for all.
It was time for getting real, opening old wounds, as a means to an end....and having a rational conversation with my mum now that my dad had passed and wouldn't prevent us from doing so.
Through Births Deaths & Marriages, I stumbled across SANDS. It inadvertently led me to Joan Noonan. 'An angel'...in my mum's words. She took the time to listen to my story, my ramblings, my insistence that there had to be documentation, somewhere, even though we had none. She helped me maintain hope that there were answers...even though I had tried to find them and hit a wall each time. It was time consuming, frustrating, there were no real dates to go by.
I left it with Joan, somewhat disheartened, but still hopeful.
It took some time, one false alarm, but Joan used her extensive resources and came through for us...she located my brothers grave. She had found him!!
Given that initially we had no dates to work with, no year, no month, not much at all, other than my mum's recount of being forced to take photos in front of the Christmas tree, after this horrible turn of events, it's quite amazing he was found. And yet, there he was, on the GMCT records.
And, as it turns out, my brother, Ante, was in fact buried on 20/11/70. Close to Christmas indeed. My mum had submissively blocked all evidence of that time from her memory...amazing what drugs can do!
It was Joan's kindness, empathy, understanding that made all the difference. A stranger who became a fierce ally for my mother, for our family. She was just as determined in seeking results. She understood, it had happened to her, after all. She was passionate about the cause and she gave me reason to believe that my brother did exist, that he could be found, that she would help us. I trusted her, even though I'd never laid eyes on her. Her motives were pure and she never asked for anything in return.
What relief! Ante was found. My mum was finally able to visit her son. Lay some flowers, bless his grave, pray over him (and the others who lay there).
These may sound like trivialities to some, but she had never dared to dream that such things would actually ever transpire. And yet, there he was, In Footscray cemetery....in an unmarked grave, where 23 other stillborns were laid to rest alongside him....where my mother had walked past on countless occasions in the past during funerals!
You truly cannot put a value on piece of mind. My mum could now sleep at night and not have those thoughts of unknowingness haunt her mind. Finally. After 46 years.
And we had Joan to thank for that.
Question: Even though you experienced your loss, years prior to SANDS AUSTRALIA's Older Loss Support Group, how did they help your grief?
Anne Gidari: It served as a platform to talk. Cry. Share stories. Be amongst others who really understood.
My mum and I were invited to attend the 20 year anniversary of the Older Loss Support Group last year in Camberwell. Although my mum is not English speaking, and had never been to such a forum in her life across town with strangers, we were embraced, welcomed, listened to. We were made to feel like we belonged being there. My mum had the opportunity to personally thank Joan who had brought comfort and closure to her life. And there were tears! The two women, two strangers were introduced, my mother and Joan, and they hugged and cried.
My mothers tears came thick and fast. At one point the trigger was the hand knitted booties and bonnets laid out on display during the celebrations.
Other women, never having laid eyes on my mum either, (who was an obviously ethnic looking lady, and in stark contrast to themselves), was hugged and comforted. They spoke slowly and held her hand. They kept repeating 'it's ok, you cry, it's good to cry'. And there was an outpouring of it I can assure you. It was an extremely humbling experience....to be told, after 46 years, that it had happened to others. They explained that the protocol of the day didn't necessarily discriminate, rather, it was just what they did, albeit horrible. It was a means to an end. Take the baby, send the mothers home, tell them to forget. Problem solved.
The antagonist and intimidating treatment from the nurses however, is certainly questionable at the very least.
I listened to the stories recounted by the other women, some who had lost twins, others who visited mass communal graves where hundreds of babies were placed together. Some were still seeking answers, others could still not locate their babies. I cried with them, for them, I felt their grief. Each dealt with her loss differently, but some of them, like Joan and the other SANDS founders, rallied with one another for support in those initial days, so many years ago. They were courageous enough to start the movement, call for change, demand that women were treated with respect and dignity, along with their stillborn babies. At least they could unite in their sorrow, and develop friendships that would be withstand over time. They pioneered the foundation, and thankfully, thousands of grieving mother have benefited from their vision ever since.
Question: What advice do you have for other parents who feel the need to be silent?
Anne Gidari: There is absolutely NO need to be silent. No need for suppressing or bottling up such a painful and life altering event.
I'm a huge advocate of a problem shared is a problem halved. I would advise them to trust someone, anyone, and speak up. Let it out. Let go of the guilt or blame, let go of the burden, the feeling of failure.
Speak up and try to get answers, because there are people around who can help….there are resources available to bring closure and they are available for everyone to access.
To mothers of stillborns, to siblings, to anyone tracing their family tree.
Question: How can Australians support SANDS AUSTRALIA's Older Loss Support Group?
Anne Gidari: Exposure. Raise awareness. Donate. Spread the word that this invaluable resource exists.
Help mothers who are still alive, and had their babies taken away in circumstances like my mums, find their babies. I've managed to locate two of my friends stillborn siblings because of the resources that I've come to know about through Joan.
Many other women, like my mum, continue to wonder, to grieve in silence or have given up hope of ever knowing the whereabouts of their stillborn, simply because they're unaware that the Older Loss support group through SANDS exists. Such a monumental shame!
Listen to older people, asking them to retell their stories. Each is personally individualised, just as heart wrenchingly sad as the other, and yet, there is a woven commonality which binds them all. They all birthed, grieved..... they all experienced loss, sadness, a level of despair, but the degree to which they were supported varies greatly. Belated support is better than none at all.
If I could, if I had the authority or ability to do so, I'd mandate some type of community campaign to launch a national database of all the stillborns from the 50's, 60's, 70's & 80's. Set up a foundation. The aim being to try and locate as many resting places as possible for the mothers of stillborns who are still alive.
I'm fully aware that in an idealistic world, this would be practical, however, as a realist, I know this will probably never happen. But it's possible. Put the word out there, invite women to call/ come along, give them the resources, or do it for them.....find their babies....provide them with closure, peace of mind, dignity. There are hundreds of unmarked communal graves throughout each cemetery.....just waiting to be marked.
Just as we have done with my brother. He has finally been given a small, simple, yet dignified plaque. It acknowledges all the stillborns in that grave, not just my brother. It provides our family with the closure that we never dreamed we'd get.
Interview by Brooke Hunter