You Can’t Quantify Loss by Miriam

Less than a week ago, my partner and I found out we were pregnant with our first child. Yesterday, we found out that the pregnancy was not progressing. My HCG levels had fallen in the four days between blood tests. Four days to hope, dream, be joyful, surprised, delighted, anxious, nervous, excited. Four days to realise hopes and dreams we’ve been building since we started trying to conceive 18 months ago. Four days to believe that my efforts to address my infertility (PCOS, amenorrhea) had finally paid off. 18 months of exercising 3-5 times a week. Of cutting out dairy, gluten, sugar, carbs. Of beginning weight training to make sure my blood sugar and insulin levels are under control. Of reducing the amount of activity in my life in order to reduce stress. 18 months of counting a sometimes regular 30-to-33 day cycle, of checking cervical mucus for changes. Of charting Basal Body Temperatures. You name it, I’ve tried it. I was about to start looking into Chinese Herbal Medicine. If that failed, I would have tried Clomiphene. 

This loss feels like a punch in the gut. I am grieving. I am weepy. I am so tired. Tired from the adrenalin. Tired from the conversations with family and friends. Tired from the crying. Tired from oversleeping due to feeling depressed, and trying to pass the time. Tired from resting, or restlessly trying to rest. 

I’m not unfamiliar with depression, and processing loss. I’ve dealt with anxiety and depression quite well throughout my late teens and early 20’s. I’m in a good place with my mental health, and I have a large quiver of emotional skills and self-care methods to draw upon to deal with this. But I feel like I cannot express this loss as openly and authentically as I would like. Why? Because I was not far along in my pregnancy. An ambiguous HCG level indicated anything from 3-5 weeks along, and was actually a post-miscarriage blood test, so it could have been a lot higher before I started bleeding.  I can’t count how many days it was since my last menstrual period because I have an irregular cycle, and didn’t get a period the month prior.

The doctor called this ‘a chemical pregnancy.’ The medical textbooks call it a ‘failed pregnancy.’ Even miscarriage websites and forums diplomatically label this an ‘early loss,’ not a ‘miscarriage.’ All of those terms are an attempt to quantify the level of loss someone is experiencing. The problem with pain is, you can’t quantify it. Especially emotional pain. Each person who is in pain is having a different experience to the next. Each one brings their own history, their own hopes and dreams, their own losses and their own level of resilience to an experience of loss. I bring my own special brew of life experiences to this loss. Unique as the next person’s . 

I bled for two weeks, but I did not experience much pain. I had an almighty backache, but no cramping in my abdomen. The bleeding was strange to me, not like a normal period, which is what prompted me to take a pregnancy test. I had hoped this was just implantation bleeding. Initially it seemed like it was, but it gave way to heavier bleeding. By the time we found out we were pregnant, it was nearly all over. That’s another thing that makes me feel almost guilty for grieving this loss - I may never have even found out about it, had I just assumed this was my period. This happens to many women, probably most who are trying to conceive. But the fact is, I did know about it. I can’t go back and change that. Thinking it could have passed without me knowing cannot change how I feel about it. Believe me, I’ve tried that on myself. It doesn’t slide. 

On the first day I knew I was pregnant, I surprised myself by stopping in the middle of my workday, tears overflowing, to write a letter to my baby. My poppy-seed sized, more-dream-than-reality baby. I say ‘I surprised myself’ because prior to this pregnancy, I had adamantly believed I would be quite emotionless about a tiny developing foetus until it got to a stage where I could actually feel pregnant (ie. nausea, sore breasts,). How wrong I was. As soon as I knew that we had conceived, and a ball of cells had made its way down to my uterus and implanted in the uterine walls and started growing a neural tube and a heart and a placenta, I felt in the deepest part of me that there was a baby inside me. 

Now I will be the first to say that I cannot possibly compare the experience I am having to that of someone who is much further along, I cannot possibly imagine how much harder this gets as the weeks go by and the baby, along with your hopes and dreams, grows bigger and bigger, and takes up more space in your body and in your heart. I cannot even imagine the pain of losing that baby. But what I can tell you, is that I was pregnant, and now I am not. For me, that’s enough for me to feel deep sadness and grief. 

Trawling through online forums of other mothers experiencing loss at this same stage has brought up mixed results. On the one hand, there are many expectant mothers only 3 or 4 weeks along, with their first faint pregnancy test line, at the first possible point they could know they are pregnant. Those mothers expressed the same sense of hope, expectation, joy, and excitement as I felt. And the same sense of loss when their 3 week, 1 day old foetuses stopped growing. Or when they started to bleed in the 4th week, 3rd day of their pregnancy and feared the worst. 

Other forums asked the question as to whether a pregnancy below 5 weeks was technically considered a miscarriage, and should they count them in their miscarriage tally? Many of them seemed nonchalant about their early losses, not counting them as ‘true’ miscarriages. Others counted them, but didn’t seem overly emotional about them. All of this searching on online forums was exhausting and eventually I had to stop looking at what others said about whether their losses were real. Essentially, I was searching for validation of my own loss, and the pain I feel at that loss. But that validation will probably only come from inside myself, when I decide that what matters is not what others think, but how I feel. 

I keep asking myself questions like ‘Will my family and friends think I’m making a big deal out of this very early loss?’ ‘Is it silly to expect other people to feel sympathetic towards me?’ ‘Am I making a big deal out of nothing?’ ‘How much of what I feel can I express to the people around me?’ I made the decision to tell my family and close friends when we found out we were expecting, as I wanted their support in the case of an early miscarriage. I believe the ‘12 week rule’ can be unhelpfully isolating in the case of loss. Of course, each couple should make their own decision about what they feel comfortable doing in terms of informing family and friends of a pregnancy. But I feel the 12 week rule is highly informed by fear. Fear of upsetting others. Fear of feeling embarrassed or ashamed about having had a miscarriage, in case anyone thinks it’s the mother’s fault. I’ve always known that I had a higher chance of miscarriage because of PCOS, and it’s one of the reasons I chose to tell my loved ones straight away. I wanted the love and support that would go with them knowing of my loss. If they choose to, I want them to go on the journey of infertility with me, as it’s a big part of my life right now.

I also wanted to be someone who speaks about pregnancy loss. One of the reasons I think I am able to cope (on a general level) with this loss is because I know other mothers this has happened to. I was aware of the rates of pregnancy loss before I started trying. I know that our bodies sometimes abort a growing foetus because it’s not developing healthily. Or sometimes for no reason at all. I know that miscarriage happens to millions of women around the world on a daily basis. I did not go into the journey to conception thinking it would be easy, or a straightforward. So I’m telling people. I’m telling my friends. In case this has happened, or does happen to one of them. I’m telling my family. Even the children. My nieces especially. So that they will go into adulthood knowing this is a normal experience to have within their childbearing years. So that if one of them experiences miscarriage, they know at least one other person in their family that they can talk to.

From my psychology studies, and from my general experiences of processing tough emotions (and my experiences of the consequences of not properly recognising and processing tough emotions) I know it is incredibly important that I consider my own feelings valid, legitimate, and real, and process them in whatever way I need to, as long as that processing is generally healthy and not too destructive or harmful to others. But I am really struggling to consider my own feelings of loss legitimate. I am afraid other mothers who’ve lost a baby at a later stage will think I am making a big deal out of something small. I am afraid the doctor will think I’m overly emotional. I am afraid my friends and family will secretly think I should get over this more easily. 

Loss before 6 weeks is often characterised as ‘Early Loss.’ Loss at 6 weeks is characterised as a ‘miscarriage,’ because a heartbeat can be detected through an ultrasound. But can the ultrasound detect the effect the knowledge of this baby had on my heart? For four days, my heart was filled with the joy of knowing a new life was growing inside me. A tiny foetus that would become a baby, that would become my child. Physically, I lost a tiny, poppy-seed sized ball of cells that was slowly forming into a foetus. But those facts don’t matter to me. I’ve tried to use the facts to console myself, but my heart won’t listen. 

I can’t answer the logical questions about whether what happened to me was a ‘chemical ‘pregnancy’, an ‘early loss’ or a ‘miscarriage. Because emotionally, I lost my first baby. So I’m going to choose to acknowledge my awkward mess of feelings. My grief. My sadness. My weepy eyes. My devastation at finding out I was pregnant for the very first time, but that my baby did not grow. My awkward insecurity about my own feelings, and the sense that I should just get past this more easily. I’m going to remember with excitement, the first positive pregnancy test I ever had. And the 6 tests I took after that just to make sure. I’m going to create a memory box for my first baby. In it, I’ll place the letter I wrote to my baby the first day I knew they were there, the pregnancy tests I took and labelled with the dates and times, the roses my partner got me the day we found out our baby had not grown, and a few messages of love and support from family and friends. 

The day we found out our baby was gone, my partner stayed home from work and we laid in bed and cuddled and let out some tears. Then we went for a walk around the park together with our two dogs. As we were walking, I was overwhelmed by the feeling of wanting to name my 3 or 4 or 5 week old baby. On realising this desire, I burst into tears all over again. I knew this desire came from a place in me that wanted to honour the little soul that so briefly touched our lives. So, despite my insecurity about the legitimacy of my own feelings, I named our baby. 

Our baby’s name is ‘Hadiah-Kivah.’ I chose words from some of the languages my partner and I have studied or have a connection to. ‘Hadiah’ is an Indonesian word meaning ‘gift.’ ‘Kivah’ is a Hebrew word meaning ‘hope.’ Together they mean ‘Gift of Hope.’ I want to thank my tiny ageless baby for giving us the ‘gift of hope’ that we are actually able to conceive. I am grateful for this glimpse of hope in what can sometimes be a long and difficult journey towards having children.

By Miriam Forte, Melbourne, Victoria.

Miriam Forte

Miriam is 31 years old, born and bred in Melbourne. She and her partner Scott have 2 dogs and two cats who they love to spoil. Miriam is studying music and psychology in the hopes of going on to be a music therapist, and she also enjoys painting, singing, spoken word poetry and blogging (wordpress.com/view/turningreenblog.wordpress.com). Miriam and Scott lost their first baby Hadiah-Kivah ("Gift of Hope") in late June 2018 but they are looking forward with hope that they will conceive again soon.

You WILL Smile Again by Sarah (Ivy’s ‘Babcia’)

Chances are, that if you’re reading this, then you already know what it is to experience that all-consuming, utterly crushing loss of a child. Although it’s been 5 1/2 years since my precious grandbaby Ivy was born sleeping into my waiting arms at 38.1 weeks, I’m as far away as I ever was in trying to convey what that was really like to another living soul. If there are even any words that could do such tragedy any real justice, I certainly haven’t found them.

As so many of you now know, life is not the same. In fact, everything is different. It’s that ‘new normal’ you may have heard about (when everything that was ‘normal’ has also died, and you have to start all over again). I distinctly recall just trying to breath. Yes...it started with that. I was certain the sun would never shine, that I’d never smile, dance or be happy ever again. ‘How could anyone ever recover from THIS?!’ An all-consuming darkness soaked through to my very core and everything changed. 

Thankfully, I’ve traveled a ways since that dreadful day and gone from wanting to dissolve through the floor of the delivery room, to where I am now... (but still travelling).

That was Oct. 15th 2012.

Fast forward to April 2018.

I’ve learnt so many things since we lost Ivy, but I wish I’d never had to learn a single one of them. I’m afraid I’m never going to be one of those, ‘If any good has come from this...’, kind of people. Nope! You can keep all that. Nothing about losing my granddaughter will ever be ‘good’ or ‘ok’. It’s just devastatingly sad, and always will be. That’s it. 

Needless to say, I didn’t choose this. It was thrust upon me. I simply came to a point where I had to choose, ‘Do I live the life I have, or do I shrivel into nothing’? It took me around 18 months to make that decision.... 18 months to summon enough strength to venture into the world again and make my days count. So what brought me to that point? I decided two important things; 
1. I was alive, (that I had a life to live, that there were people who cared about me and needed me), and 
2. That when things are this bad, the LAST thing I needed was anything, ANYTHING at all, to make it worse! I realised that whilst I couldn’t make the bad things better, there were things I COULD do to prevent other things from worsening, namely, my physical and mental health. I joined a gym to chase the endorphins (I used to be a gym instructor before I had my eight children, so I knew how that all worked), and I pushed myself here and there to do things that, although horribly difficult, I knew in my head were good for me. I ate more healthily, I organised bbqs with the family, and took trips with them to places like the forest and the beach to get out of the house. The family was ‘safe’, socialising with others, on the other hand, took me at least another six months. Somehow, going out and having general chit chat just seemed so ‘frivolous’ that I simply couldn’t relate. I didn’t want to burden my friends with constant talk of Ivy and what I’d been through. Ivy was my loss, not theirs, and I was determined to keep that in mind, but she was still very much front and centre and occupying my every thought. But eventually, I started accepting invitations for coffee and the movies. And the rest of the time, I kept damned busy! I burrowed down into housework, cooking, sewing and whatever I could find to give my days purpose and some sense of satisfaction. All this took truckloads of grit determination, and practice, practice, practice! I refused to give up! Everyone I ever spoke to, or read about, who was also travelling this grief journey said exactly the same thing...’it does get better. Things DO improve! It won’t always be like it is now!’ I decided that they would definitely be the ones to know, so they had to be right. I trusted them. No one ever suggested things would be the same, or that you’d never feel sad any more....nothing like that. Just that the all-encompassing weight that holds you to the floor, WILL lighten. You’ll notice I didn’t say it will, ‘go away’, or ‘evaporate’...because that’s ridiculous. Some things we simply accept we must learn to ‘carry’, and a beloved child will forever be ‘carried’ in our hearts and minds. Little by little though, often without noticing tiny changes, they appeared; you laugh at a joke, you sing along to a song on the radio, you’re proud of the birthday cake you’ve laboured over for your son all day, and you say ‘yes’ when your husband asks you to dance. Often it’s not until time passes that we have the benefit of hindsight, and can recognise that we’ve made any progress at all. And I came to accept too that there will always be days I deem ‘unsalvageable’, and that it can take more energy to fight them than to just ride them out and know tomorrow will be better. I’ve also been mindful of being kind to myself and not to impose all manner of hard and fast rules about ‘what, when and how’, but simply to go about my days with productivity, rest, and doing something enjoyable for myself in mind. I figured anything in this life that’s considered worthwhile takes practice, so I practiced ‘life’ again. 

At this point, I have to be honest, I became an expert at ‘wearing the mask’ (you know, we all do it...faking it). Just because I was smiling at a newborn baby on the outside, didn’t mean I was wasn’t crying and screaming on the inside, for example. Just because I seemingly happily asking a young, pregnant lady how far along she was, I hid the fact that I was really wanting to know if she was at that same point when we lost Ivy (and she was). I can give her a hug and (sincerely) wished her well, but then went home and feel incredibly ‘flat’ for the next few days because it simply brings everything we went through flooding to the forefront again.

So, 5 1/2 years on, the triggers are still all around, sorrow is never far away, Ivy is still gone...but there is ‘light’. Laughter and dancing have returned, (and yes, I’ve had to fend off the guilt that typically accompanies them, and still do, to varying degrees. I catch myself asking, ’How can I be happy, when my grand baby died?’), but genuine happiness is coming back into my life. And it’s good. It’s right...and I deserve it. I’ve worked so, so hard for it!

Work hard for that for you too. It’s worth all the effort. It really is. 
With all my heart...I wish you well.
You deserve it! You deserve your life back!

Sarah (Ivy’s ‘Babcia’)

The 'Secret' World of a Bereaved Parent by Emalynne

My husband and I lost our first born daughter, Annabelle on 10 August 2012. She was stillborn, something that you just can not believe actually still happens in this day and age. You realise though as you learn of the secret world of bereaved parents that it happens much more often than you care to believe. It was a difficult and dark time when Annabelle passed and continued to be difficult and dark for many days, weeks and months afterwards. 

Coming out of that haze, I realised that life continued for those around me. As I began to go back to “life”, it was hard to work out what to say to people when you saw them again. It was especially hard with those who expected me to have a baby in my arms and they are unaware of what tragically had happened. It’s that difficult circle of people: colleagues and acquaintances that aren’t close enough to be those friends who learnt straight away of our baby’s death, but were well aware that you were pregnant. Going back to “normal life”, meant having to interact with them and explain to them the trauma of our loss. As I found myself repeating the story of the lost of my beloved Annabelle that soothed me but brought such sorrow, I could not bring myself, at times, most times, to do it again tomorrow. 

Although blessed with a subsequent pregnancy, it brought such anxiety as innocent questions from strangers abound about the number of children I had and what number pregnancy this might be. I might give an answer that doesn’t sit quite right, so the next time I gave another. As an overthinker, there is a whole lot of mental gymnastics to work out what to say. I wanted to make sure that I respected and honoured my child while managing the emotional turmoil and anxiety I had inside about what further questions may ensue from the answers that I gave.

In the end, I decided whatever answer I gave, they don’t remember it and I sit with the answer for what feels like forever because it doesn’t matter as much to them as it does to me and it just doesn’t seem to do my child justice. 

But you know what? 

As bereaved parents, we just do what we feel comfortable. There is no right or wrong way to answer such questions as time and life continues following the lost of our children. You navigate life as well as you can and do what you feel right to live and breathe the new normal that is your life without your beloved child. For me, to respect and honour my child, Annabelle is to continue to live my life and what it stands for.

Emalynne

If you require support after reading this blog, please contact Sands on 1300 072 637

Emalynne So

I am a mother to Annabelle, stillborn on 10 August 2012, BabySo, miscarried at 12 weeks on 20 June 2013 and Jema who was born in July 2014. I share my family's story to help honour the memory of Annabelle and BabySo so they can still make a difference to another family's journey on this path despite not having stepped a single foot on this earth.

My Precious Nugget by Ellie

I know you’re not ‘supposed to’ admit this but when I found out I was pregnant I cried. Not tears of joy, but tears of pure fear. The pregnancy had been planned and I’d been so excited that I had taken pregnancy test after pregnancy test until I got those two pink lines. But alas, when I finally saw them, I was terrified. I began questioning if my husband and I were ready and able to give this baby the best care possible. I then harshly judged myself for not rejoicing in the little miracle we had made, like you’re ‘supposed to’ when you’re in a committed relationship and are trying for a baby. This is something I’ve learnt from having a miscarriage; it’s the times I told myself I was supposed to think or feel a certain way that fuelled the guilt I felt when I lost my baby.

Even writing the words ‘my baby’ sparks doubt in my mind. I had a miscarriage at 5 weeks just before Christmas. Christmas Day was difficult as we spent it with people I didn’t know well and some of their babies. Just the sight of the babies made me cry and feel resentful towards those new mums for what they had and I didn’t. That’s when the guilt crept in. After all, my baby wasn’t like these babies. My baby didn’t have a face or a gender or even a real name, we just fondly called it Nugget. I had quickly grown attached to Nugget and I imagined a life with the little person inside me. First words, first steps, first day of school. I was grieving the idea of someone rather than a person I had actually met.

Finding out I was pregnant so early meant that only a few people in my life knew about it. We had planned to keep it quiet before 12 weeks because that’s what you’re ‘supposed’ to do. I knew that this was in case something went wrong but to be honest, I naively believed that this was just something people said. After all, I was young, healthy and fertile. I’d heard plenty of stories about women who had trouble conceiving but barely anything about miscarriage. The lack of awareness added to the shock when it happened to us and we were even more shocked to learn about how common it is. I often found myself asking, why didn’t I know this was a real possibility and why are we ‘supposed’ to keep quiet in case it happens? For me, keeping the news to myself when I fell pregnant left me open to not knowing where to turn when things didn’t go as planned. I’ll never forget the morning I came home from a yoga class to find I was bleeding. Instantly I knew something was seriously wrong and the most primal scream I’d ever heard left my mouth. My instant reaction was to call my mum however, she didn’t know I was pregnant. I could hear her confusion on the phone as she became excited and then concerned, reassuring me some bleeding can be normal. By the next morning my husband and I were in hospital being told I would need blood tests 48 hours apart to find out if I was having a miscarriage as I was too early for an ultrasound.

Those 48 hours of waiting were emotionally excruciating but possibly more painful was the reaction from the woman taking my second lot of bloods. As she expertly stuck the needle in my arm she explained that we were hoping for my hormone levels to go down. I glanced across at my husband who looked like he’d been shot. “Up,” I said assertively. “We’re hoping the hormone levels will go up.” The assumption that we didn’t want the baby angered me and made me feel guilty for not being ecstatic about the baby from the beginning. If I had reacted with joy instead of fear when I found out I was pregnant would this be happening? Or was it something else I did? Should I not have gone to yoga that day? I was reassured by hospital staff that this wasn’t the case and lots of women go through miscarriages. In fact, given I was only 5 weeks along some women may not even know and may just think it is a late period. Once again, guilt reared its ugly head and I felt silly for mourning a late period.

Eventually I learnt to stop putting so much emphasis on what I was supposed to be feeling and just accept that I had been through something difficult and painful. I stopped asking what I was supposed to do and went with what felt right. For me, talking about it with trusted people helped. I’m so grateful to the women who have shared their stories with me and provided support and hope. For my husband, he preferred not to share our loss because his friends and family didn’t know we were trying for a baby. He wanted to keep the news of our next pregnancy a surprise. We were lucky enough to get pregnant right away and I’m now in the second trimester. Those first 12 weeks were full of anxiety as I often checked for signs that something was wrong. Even though I often complained, they were also full of gratitude for my terrible morning sickness telling me something was coming to life inside me. Getting pregnant again straight away was such a blessing and provided a much welcome distraction from our loss however, it also forced me to move on very quickly. Every now and again I have a low day when I remember the grief I didn’t always acknowledge. Instead of fighting it or telling myself I have no right to feel that way because I’m pregnant, I just let myself feel it and give myself the compassion I deserve.

Ellie

If you require support after reading this blog, please contact Sands on 1300 072 637

Ellie Bethel

Ellie is a psychologist living on the Mornington Peninsula in Victoria. After having a miscarriage in December 2017, she is expecting a baby boy in October this year with husband Jeremy. Ellie is a self-proclaimed crazy dog lady and adores her fur baby Spencer. She is also a one eyed Sydney Swans supporter and loves doing yoga.

Vicki Lee Dean by Tracy

My story is not just that of a grieving Mother of a Stillborn Baby born back in 1985, but that of parents who had the opportunity to be a part of the changes made to the National Code of Ethical Autopsy Practice.  By being a part of this, although the circumstances at first were quite distressing, it gave me and my husband a chance to represent our child, to have her existence acknowledged by others. 

On ANZAC Day 1985 at 7.10am Vicki Lee Dean was born sleeping at The Queen Victoria Hospital at 25 weeks gestation. After a routine appointment & follow up ultrasound it was confirmed my baby had passed. It was also our first wedding anniversary that week.  I was then induced, enduring a ten hour labour. She was whisked away from me and I walked out of the hospital with 2 polaroid photos of her. That week was such a blur as we were also moving into our new house.  Thankfully when I left hospital I walked into our new home after family had so very kindly moved all our belongings for us. At first I did not want to deal with a funeral but after a fortnight I decided I needed to lay her to rest. We had a small family graveside funeral at Centennial Park. 

We grieved like every parent does. We got on with life and were blessed with two healthy children in 1986 and 1988. They grew up knowing they had an older sister and every year we visited her grave on ANZAC Day. Back then though miscarriage & stillbirth weren’t discussed much and the only support available was from your Doctor or the wonderful people at SANDS. Back then we had only the telephone and the post as means of communication.

Then in early July 2001 we sat down to watch the evening news when the headlining news report was the finding of organs & tissue samples taken from stillborn babies born at The Queen Victoria Hospital in the 1980’s.  These samples had been found stored in the basement of the Adelaide Children’s Hospital after the closure of the QVH in 1995. We were mortified at the thought of this and immediately contacted the hotline number leaving our details.  Several days later we received a telephone call making an appointment at the Adelaide Children’s Hospital. 

We met with the Coroner and a Counsellor who confirmed with us that they did indeed have tissue samples belonging to our Vicki.  Twenty-six samples in total, twelve tissue blocks and fourteen slides.  We had many questions that were answered by the Coroner.  We had decided that if these samples were aiding in the research into stillbirths and other issues concerning the unborn then we would allow them to remain with the hospital.  I also asked for a copy of the autopsy report. I also raised my concerns about the approval required for not only the retention of these tissue samples but also the actual autopsy itself.  I had no recollection of signing a form giving my consent for Vicki’s autopsy.  My Husband told me that I was asked to sign the paperwork for this 3 hours after delivery whilst I was still under the effects of sedation.

I will never forget how I felt on the day we walked into the Hospital to meet with the Coroner.  This was my chance to represent my precious baby.  This was the one time I would be able to speak up for her and do something for her.  

In October 2001 I received a letter confirming our meeting with a copy of my Daughter’s Autopsy report.  On reading the report I felt some sort of closure.  I had been told by my Obstetrician that there was no definite reason for my baby dying in utero. The Autopsy report did however state that my baby’s overall development was not at the same stage as her lung development.  To me that meant there was a reason nature had taken it’s course.

In early 2002 I was contacted by the National Ethics and Privacy Policy unit and invited to participate, through consultation, to the changes being made to the National Code of Ethical Autopsy Practice. I met with the Policy Officer for several hours and we discussed my experiences and how they needed to be improved.  Some months later I received a letter thanking me for my input and a copy of the new National Code of Ethical Autopsy Practice.  It included both issues that I had raised in this Code of Conduct.

So now in 2018 I see so many changes in the way in which we deal with the bereavement and loss of a baby. We took part in the Inaugural Centennial Park Celebration on October 15 2017.  That was just so therapeutic. The taking of foot and hand prints, a small lock of hair are just simply wonderful.  For us we have just a couple of ageing polaroid photos. I get some sort of comfort from knowing that the loss  My Husband and I endured has played a small part in some of these changes both ethically and medically.  Our Daughter Vicki may not have lived but her existence has certainly made a footprint.

Tracy Dean 

If you require support after reading this blog, please contact Sands on 1300 072 637

  

Now and Then by Bex

Before her, I took Motherhood for granted. I took everything for granted. That was when I lived in the ignorant, blissful “then” days. That’s all changed and I live in the “now”.

I wasn’t supposed to be able to have children, yet I found myself pregnant at 20. It was easy. My daughter was born, and life went on.
Twelve years later I met my soulmate, and fell pregnant. At 34 years old I was happy, it was smooth sailing. Still, it was a surprise just six months later, when I discovered I was pregnant again. There was a few overwhelming moments but we were excited. We started planning....
Just before our first scan I started spotting. Nothing major, I was reassured, and no one was overly concerned. This was only emphasised when we made it to the scan and saw our little bean happily bouncing about, her heart beating away. We were told after seeing the heartbeat we dropped down to 10% miscarriage risk. Relief.

A couple of weeks later the spotting returned, so I went back to my doctor. She sent me for another scan, and the sonographer was a lovely, older lady. The minutes ticked by as she rolled the Doppler over my belly. She said nothing, and I scanned her face for any sign of what she was feeling, or thinking. My anxious brain was screaming, “Please say something!!!” She didn’t.

The place where my baby was before was a black empty space. My baby had disappeared.

I felt instantly nauseous, like a million butterflies had settled in my chest, as she swapped to the internal Doppler. I looked at the screen and saw her. The saddest sight, our little girl, curled up into a ball in the deepest, darkest part of my womb. The sonographer apologised, and let us know she was gone, there was no heart beat.

I felt multiple emotions all at once. As fast as they came I locked them away. I asked the sonographer if she was ok, the look on her face was one of devastation and discomfort at having to tell us our baby had died. My husband squeezed my hand, poor thing what else could he do? We never imagined this could happen to us.

It seems our baby had died two days after our first scan. I carried her tiny body without a clue she had died . The next few days passed in a painful blur. When I left the hospital without her I felt lost and empty.
My life is now split into two...before we experienced baby loss, and the life we now have to lead without her. Now and then. Some days I hate living here in the now, and would give anything to go back to then.


♡ RIP Emmah Jae Lampe 10/3/2010

Bex

If you require support after reading this blog, please contact Sands on 1300 072 637

Bex Lampe

Bex lives on the surf coast in Victoria. She is wife to Gav and mum to four Earth side

babies. Emmah and Flynn are her two angels. Bex is also a first time Grandma! She recently achieved a Diploma of counselling and is hoping to complete her Diploma of Community Services this year. Currently a stay home mum with three little ones, she’s hoping to get back to the outside world next year. 

Bex has two rainbow babies born after her miscarriages. They were born with severe congenital conditions. Congenital Heart defects for her eldest son and Congenital Diaphragmatic Hernia for her youngest. Both requiring birth into NICUs and major surgeries. 

Bex has worked as an AIN in Aged, Disability, and Dementia care, as a private disability nurse and also as an assistant to a prison chaplain with the Salvation Army. She has also been an artist and a poet. Bex loves to help people and hopes to help many bereaved parents with her experiences. 

Her dream is to be published again, and to one day write a book. 

A Grandparents Perspective by Lee

Lexie's Garden

Three and a half years ago we said goodbye to our rainbow baby Lexie, my granddaughter.

Everyone finds their own path whilst grieving. Some are broken and struggle to continue, some keep to themselves and hide their feelings, some hit out their pain and hurt anyone and everyone around them, some move on quicker than others.

The father tries to comfort the mother, as well as deal with his own grief.

The mother is lost. Broken. Part of her is missing. She can’t function, she wants answers, and as her body is repairing itself, her heart continues to break.

Time, understanding and talking helps.

Lexie now has a sister and more recently, a brother. Both of these pregnancies were very stressful for everyone concerned. Ongoing scans and tests right up to delivery (remembering that everything was good with Lexie until 24hrs after her last scan).

My daughter insisted they delivered the babies early, which proved to be for the best.  All was good.

I have found that people don’t know how to talk about the loss of a baby.  People ask me how many grandchildren do I have.  I answer 6, with 1 in heaven.  Some people have suggested we should “let go” of Lexie.   How do you?

I think of her every day. Every day.  The worse times are her anniversary and Christmas, there is always lots of kids around, but one is, and always will be, missing….

It can only be so much worse for the parents. Having more babies helps, but it will never replace the little girl they lost. 

Grandmother Lee

If you require support after reading this blog, please contact Sands on 1300 072 637

Pure Love For Our Pure Spirit by Kerry

❤ELARIA RHIANNON❤
Pure Love For Our Pure Spirit

We felt like someone was missing; our family was incomplete.
Girl or boy,
There was someone else to meet.

We felt you moving; your oldest brother couldn’t wait.
Bigger car, double pram.
Is there such a thing as fate?

We predicted a girl, we felt pretty sure.
Anticipation, excitement, joy.
Love for one more.

I had a baby shower, I organised your clothes.
Scans, CTGs, exams.
Our excitement only rose. 

Painful contractions 24/7, starting 9 days before you were due.
Phone calls, appointments, “early labour.”
“Call us” with anything new.

Contractions 3 minutes apart, for at least a minute long.
Three days before you were due,
Something had gone so tragically wrong.

Friday I’d felt you move, Saturday I wasn’t so sure.
Another phone call and a home Doppler.
Pain too much to ignore.

Finally a car trip to the hospital; we arrived just after midnight.
Doppler, scan, worried faces.
Darkness invaded our light.

“What is happening?!” “This is a nightmare!” Staring at each other.
My head fell into my hands.
What to tell your biggest brother?!

Personal goals and rationality aside, I thought cut me open while 
I’m asleep.
Our Ob. arrived along with rational thought.
My VBAC goal I’d keep.

We were told you’d probably be born, by the time 12 more hours 
had passed.
But darkness quite literally returned.
Aren’t nightmares usually fast?

Candles were lit below our window; it was Pregnancy and Infant Loss
Day!
Kept to myself in the car,
Not to jinx the, everything’s ok.

A new day was fast approaching, but the end was in sight.
A professional photographer would be there.
Empathy and kindness in the middle of the night!

When we finally held you, we couldn't look into your eyes. 
You were so pretty, so cute, so perfect.
Then began the sighs.

Your Dad opened the suit case to make a selection from your clothes.
A simple task made so difficult,
As pure devastation quickly rose.

We chose a dress with a purple tutu, white flying unicorns in the sky.
The only outfit you’d ever wear.
Why?! Just WHY?!

In the last 10 months we lost your Great-Nanna and your Opa.
Are you now with them?
Please tell me you didn’t go far.

A beautiful soul set free, did you have a greater purpose?
Did you choose us as parents?
Your life gives so much more than hurt us.

Your due date arrived, we’d been told we could go home.
I told you I loved you.
Waiting for the car, I felt alone.

Another trolley of suitcases arrived, with a mum and newborn too.
A moment I may never forget.
Why couldn’t that be me and you?!

Your Dad found me in the shop, where I’d made my escape.
Mums with babies and girly things,
Just too much to take.

Ready to go home, I was feeling pretty numb.
Our car had an empty capsule.
The past could never be undone.

Life seemed surreal; food no longer tasted the same.
We questioned, cried and worried,
Wondered where to place the blame.

It became startlingly obvious, we were forever changed.
Ripple, ripple, ripple.
Our whole future rearranged.

You imprinted on our hearts, imprinted on the world.
Through kindness, compassion and insight,
Your gift has unfurled.

Do our souls again evolve in the midst of a pain that may 
never leave?!
Did you suffer?! Feel pain?! And why?!
Will there be any reprieve?!

Love is eternal, our love for you remains.
Empty armed and broken hearted.
Our pain waxes and wanes.

Are you our angel in the sky? Was this the way it was meant to be?!
39 weeks, together as one.
Your whole life within me.

'Ask Me Again' by Samantha

This poem was written by myself and aims to provide some insight around the emotional fragility of grieving and bereaved parents which often results in them feeling socially isolated. 

The poem was written in mid 2015 following the stillbirth of our second son Hudson James Rowe.

“Ask me again”

Did I miss our lunch date today? Please ask me again,
Did I forget to call you back today? Please call me again,
Did I decline your invitation today? Please ask me again,

It's not because I don't care,
Or because I don't want to be there,

Amidst my world that is now awash with such sadness & grief, 
I'm trying to make sense of it all, but I'm confused beyond belief,

So I need to take some time out for my heart and soul to heal, 
And to do this sometimes my life is completely reliant on emotions and how I feel,

My dear friend what this means that I'm asking of you today, 
Is to remember that I'm currently heartbroken and feeling pain that won't go away,

So if I happen to decline your invitation, 
Please promise me that you will ask me again.

         © Samantha     

If you require support after reading this blog, please contact Sands on 13000 72637

Samantha Rowe

My name is Samantha. I am a Bereaved Mother located in Melbourne.

My partner and I have had an incredibly tough baby journey to date. We have lost 8 consecutive pregnancies/babies and are yet to have a living child.

Cooper was stillborn on 14.02.14

Hudson was stillborn on 23.01.15

Emma & Zoe (identical momo twins) tangled their cords and passed away on 30.08.15

I’ve also had subsequent miscarriages on 16.09.16, 31.12.16, 13.10.17 & 16.11.17.

We are commencing ivf shortly to see if that can help us achieve our dreams of becoming parents to a living child.

I run a social enterprise called Memories of an Angel which raises awareness for Pregnancy & Infant Loss. We sell Pregnancy & Infant Loss Awareness ribbons, pins and a collection of other Pink & Blue items. I am extremely passionate about raising awareness for Pregnancy & Infant Loss and very proud to be pioneering the cause and bringing these special keepsakes to bereaved individuals and families across Australia.

Memories of an Angel also coordinates a variety of events for special days such as International Pregnancy & Infant Loss Remembrance Day, International Bereaved Mother’s Day, International Bereaved Father’s Day etc.

Rainbow Child Questions by Dani

Life with a rainbow child comes with many challenges and many questions. Some come out of the blue and knock the wind right out of you. Out of all my mumma loss friends, my rainbow is the oldest, at 5 and a half years old, so I have not had many people to turn to for how to answer these difficult questions. And unfortunately they need to be answered when asked.

It’s difficult to ask for help as well, as everyone’s beliefs differ when it comes to what happens when we die. But what I have found first and foremost is that honesty is the best policy. I have never sugar-coated the truth, and on occasion, have copped some backlash over this decision;  but in being honest , there are no secrets between us. My rainbow Harrison knows he can come to me about any questions he may have about Jasper, death and the afterlife and know that he does not need to worry about my reaction.

Harrison is very switched on, and isn’t satisfied with the basic answers, so my answers have to appropriately answer his question, or there will be millions of follow up questions. And it is amazing just how much he understands.

Here are just some of the few we have been asked, and of course how you respond will vastly depend on your personal beliefs and how your child absorbs and asks questions.

When will you have another baby? Unfortunately mummy can’t have any more babies.
Why? Sometimes it is very hard for a mummy and daddy to get pregnant. Mummy can’t have any more babies because my body doesn’t work the way it should to make babies. When we had you we needed lots of help from the doctor so that you could be born.
Does it make you sad? Sometimes I wish mummy and daddy could have another brother or sister for you, but we are very glad to have you, and you are enough for us and our little family.


How did Jasper die? You know how babies are in a mummy’s belly for 40 weeks? Well Jasper was only in there for 26 weeks, and that is very early for a baby to be born, so he was very sick, so even though the doctors tried very hard he was just born too early.
Why couldn’t the doctors save him? Because he was born too early and his lungs didn’t work properly. Doctors are very clever at saving people but sometimes when babies are born too early, some of their body doesn’t work properly and the doctors can’t fix that.

When will he come back? – this one is particularly difficult to answer. But not being truthful will only cause more confusion about the finality of death.
Jasper lives in heaven now, so although we can’t see him and he can’t come back, he can still see us and watch over us. He can’t come back, but when we are very old and die we will see him again in Heaven.
Can he hear me if I talk to him? Even though we can’t see him, he can see and hear everything we do. If you find a quiet spot in your room and talk to him, he will hear everything you say.

If we cremated him, how did he get to heaven? Our bodies can’t live forever, which is why our soul was created, our soul which is everything of who we are. Although Jasper’s body is gone, his soul lives in Heaven and is watching over us always.
Is he all alone in heaven? No, he has all the angels and your great-grandad holding his hand and playing lots of games with him.

I don’t want my mummy and daddy to die / Will I die one day – this one was absolutely heart wrenching to hear from a 5 year old.
Although everyone dies, usually you don’t die until you are very very old and have lived a very long life with your family. No matter what happens to mummy and daddy, you will never be alone and there will always be people who love you and take care of you.

I miss my brother so much… Mummy and daddy miss him too and think about him all the time. If you want, you can hold his teddy in bed at night and when you hold him and talk to him he will come down from heaven and hug you while you are asleep.

These questions are just the main (and difficult) that Harrison has asked us, and the way we have approached our responses. I think the main thing is, it is ok to say “I don’t know” and we strongly believe that it is ok for Harrison to see us get emotional, for us to miss Jasper too. It is ok for him to ask these questions knowing we will help him understand as best we can. 

Dani

If you require support after reading this blog, please contact Sands on 13000 72637

Danielle Hall

Wife to Corey and Mumma to two boys: Jasper Rhys in heaven and Harrison Phillip Robert in her arms. Jasper passed away after PPROM at 23 weeks and birth at 26 weeks, surviving for 10 hours in the NICU unit. Currently completing a Master of Social Work with the goal to aid in the safety and protection of all children, because all children deserve to feel safe and loved.