Things I Wish People Understood - Part One by Suzanna

At 36, I’ve lost a parent, a friend and a child. There is nothing on Earth more harrowing than burying a child, even if you never had the privilege of knowing them. My husband, Ted, and I lost our beautiful baby Ella in January of this year. She was stillborn at 34 weeks. She was, and always will be, the most beautiful thing I’ve ever seen. I can’t bring myself to talk about the magic, and joy and horror of our experience. I can’t bring myself to share the details which are personal, and raw and sacred.

What I can do, is tell you about our grief and the things I’ve learnt.

There is abundant kindness in the world

It’s important to savour the great kindness that is apparent in times of despair. Since losing Ella, we have been touched by people’s tenderness and humanity. We have been shown support through flowers, plants, cards, texts, gifts, keepsakes, meals, phone calls, long distance visits and all manner of thoughtful gestures. Often, this kindness has come from the most unexpected places. We are grateful beyond words.

We are tortured by things which ought to bring us joy

Babies are a source of collective joy, especially among women. But for my husband and me, they are a form of torture – an excruciating reminder of our loss. I can’t see a pram or a pregnant woman without wincing. Sadly, babies seem to evoke in me a kind of emotional anaphylaxis – fear, paralysis, constricted breathing.  But babies are not like peanuts; they can’t be easily avoided. There isn’t a supermarket, shopping centre or café on the planet which is baby-free.

Leaving the house is Hell

Any journey beyond the sanctuary of my home involves walking the gauntlet of prams and mothers’ groups. Given that I live in a small community, it also involves visiting places which evoke memories of being pregnant, excited and full of hope. Finally, there is the horror of bumping into a myriad of acquaintances who, upon noticing that I’m no longer pregnant, gleefully ask how motherhood is treating me. 

Greif has no end point

At Easter time, I had a chance encounter with a bereaved mother whose son had been dead for 15 years. She knelt at her child’s grave, literally howling in despair. It shook me to my core. It made me realise this: time does not heal all wounds. We never stop mourning the loss of our children, and there will frequently be ‘triggers’ that reignite or intensify our suffering. Typically, the things which bring joy to others are our greatest sources of pain – Christmases, birthdays, Mother’s Day. This seems particularly cruel. Unfortunately, bereaved parents mourn more than the loss of their children. They mourn every milestone that ought to have been enjoyed.

Children are not replaceable

Let’s be very clear: children are not disposable. They are not replaceable. In the wake of Ella’s death, the most hurtful remark I endured came from a man – with three adult children, no less - who laughed and replied ‘oh well, you can always make another one’. Comments of this nature show a disgusting and disturbing lack of humanity. A baby is no less loved than a toddler or a teenager or an adult child. Next time you think that my child’s life doesn’t matter, consider which of your children you’d willingly trade or discard. A brief life is still a special one.

The conversation gets awkward

Bereaved parents – especially those of us who are still adjusting to our circumstances – often don’t know what answers to offer people. Inquiries as to whether or not we have children are painful to navigate. I can’t bear to tell people that I don’t have any children. Denying Ella’s existence dishonours her and causes me great pain. In saying that, I don’t want to tell strangers that my baby has died. I’d like to declare that I have a child, without any obligation to flesh-out the miserable details. But it’s deceptive and probably unhealthy to mislead people into thinking that you are parenting a living child when you’re not.   

Suzanna

If you require support after reading this blog please contact 

Sands on 13 000 72637

Suzi Maxwell-Wright

  

My name is Suzi. My husband, Ted, and I are trying to heal after losing our baby Ella Rose Argyle (21 January 2017). Ella was stillborn at 34 weeks, after what appeared to be a healthy pregnancy. As we declared on her headstone, Ella is ‘beautiful, longed for and eternally loved’. She is, and always will be, a part of us. My hope is that this blog will honour her precious life and help other bereaved parents feel less alone as they navigate their grief. 

Things I Wish I'd Known - Ally

Never did we expect the outcome of our blissful pregnancy to end with the beautiful and short life of our only daughter. After a devastating six weeks of scans and tests, solemn news and flowing tears, at 24 weeks, you graced us at 1:08am on January 12 2017. It was surreal, the sound of an empty room after the midwife informed me that I was about to meet my daughter. I would never be prepared for what came next, the smallest, most fragile and precious baby that I would ever lay my eyes on. 

After an emotionally draining and exhausting 16 hour labour, you were wheeled away for more tests while I briefly slept, only to return wrapped in your angel gown, resting peacefully with your head on your hands, as if you were merely sleeping. 

Of course, was born asleep, and would stay that way, no crying, no feeding, no laughter. The hardest moment of all would be leaving her, walking away from that hospital room, a mother and father leaving the hospital, without the baby they came with. I still will never know how I put one foot in front of the other and was able to walk away from her. The hardest thing I'll ever do.

It was, but then I would never know that the grief of losing a baby never really leaves you. You just find ways of coping. But you'll never forget that you left the hospital, with an empty heart, that of a mother without a child. 

Looking back, my favourite pastime was listening to her speedy little heartbeat every morning and evening. I had hired a heartbeat monitor for peace of mind. I kept thinking while her heart was strong, surely she could overcome anything else. I would send positive thoughts, my steely determination pushing her to survive. But it wasn't enough, and she couldn't fight it. Knowing how sick she was now, I know she was incredibly strong to have survived that long.

I had to stop listening to the recordings to try to distance myself from those happy memories. I thought if I could busy myself, throwing myself into my work, I could get some distance from the pain. Distance from the hurt, from the emptiness. I would never know how it feels to be alone in this world, until the one person I had the closest possible human connection with, is gone. Only one person knows what my heartbeat sounds like from inside the womb. I frequently heard hers but she lived only ever hearing mine. 

What I would never know is that there is no distancing oneself. From the moment I could feel her, the moment that I knew of her existence, there would be no way of distancing myself. Especially after she's gone. Instead, I am left only with these regrets. 

Edie,

I regret not listening to your little heartbeat until the very moment that your little heart stopped beating.

I regret not lying there absorbing your every movement so that I could look back and remember it as some of the best moments of my life. 

I regret not taking photos of myself, through every happy and terrifying moment of my pregnancy, proud of my pregnant belly and the gorgeous baby inside me.

I regret not filming myself while you twisted and turned, so that I could look back and try to recall that feeling.

I regret that I don't have a smell that reminds me of you. No new baby smell, no talcum powder or baby wipes. New mums would take this for granted I'm sure, all I want, is to hear you cry just once and smell a gorgeous newborn baby smell.

I regret that I don't have a song, which makes me happy, thinking of the joy you brought to our lives. 

I regret that I can't recall your warm body when you joined this world. My brief time with you, the one time I held you, I no longer remember. 

I regret that pain medication I took to try to make your birth easier, instead robbed me of my memories and time with you as I slept, exhausted from the morphine I had asked for.

Instead I can only recall my last moments with you, touching your cold skin as I said my last goodbye to your tiny, fragile body. It breaks my heart how small you were, only 320 grams at 5 months pregnant.

I regret that I was so tired after such a long day that my only memories are fading and it hurts my heart that I may only be left with photos of you, photos that do not do your beauty justice. Photos that cannot describe the honour I have of being your mummy.

There are fleeting memories and photos, sad songs and no smells. All that we are left with now is a tiny box of ashes, which fail to acknowledge to the world that she was born, and was a child of ours. 

We will love you endlessly, Edie Grace. You were and will be loved beyond measure. 

- -

Ally Downing, mother to Edie Grace Downing

If you require support after reading this blog please contact 

Sands on 13 000 72637

Ally Downing

Ally is a first time mother whose daughter Edie Grace was stillborn on January 12, 2017. Three months on, Ally and her husband Greg still have no medical diagnosis for Edie's death as they await genetic testing to shed some light on her illness.

As a publicist, she felt it was beneficial to share her story for other grieving mothers, to raise awareness about loss in pregnancy, particularly for first time parents. As the joys of motherhood still await Ally, in the meantime Ally and Greg are supporting each other, frequently speaking of their beautiful daughter they were so blessed to meet, to honor her memory. 

A Story of a Medical Termination by Zena

To the newly bereaved parent,

Please know that you're not alone. I want to share my story of medical termination.

This was extremely hard to write and share, in a world full of supportive people we have certainly felt alone because it's such a taboo and people are scared to talk about anything to do with the loss of a child. Unfortunately,  we live in a world where, we as humans, are judged for what shoes we wear, what house we live in and whether we like boys or girls so when we had to make a heartbreaking choice,  it became apparent that we would be fearful of what people would think.

The reality is that you are not in our shoes and you never will be. Even if you have to take the same path as us your story will still be different. Although we wish this would never happen to anyone the reality is once you get outside the bubble you live in it's everywhere, people are silently grieving, too afraid to let people know what's going on because they are scared of judgement. I've met some of the strongest mothers and heard their stories, some full term, miscarriages and medical terminations, the way people treat their child as if they don't exist weeks after they went through the toughest struggles is appalling. It took me almost 12 months to grieve my best friend passing away, she was my puppy of 15 years. ’’Getting over” a child passing away will not happen in weeks, months or years because you don't "get over them",  they are a part of you forever. I feel If we share her story and someone you know or perhaps years down the track your children or children children’s have to face something like this you might be able to say that you knew people who went through this and you know that they survived and made it through.

This story is about our daughter Chloe who is no longer in my tummy we should be around 8 months pregnant today but sadly I am not. In a few weeks I would be on maternity leave and instead we are trying to find our "new normal". This story is about 10 weeks of survival, learning how strong your marriage is, courage, loyalty, friendships, love and a $h!t unfair situation. It's not being posted for you to feel sorry for us we have done enough of that for ourselves but more for awareness. #breakthesilence. It's to help us in our grieving process because bumping into people in the street that don't know our story is terrifying.

On the 30th of April 2016 we should have been welcoming a precious bundle of joy into our lives listening to her cry, changing her nappy, watching her smile and grow and instead we will release balloons and blow out candles cake on behalf of her. We we're faced with decision that we would never wish upon anyone, we planned a funeral when others listened to their babies beautiful cry and we set a baby room up for our little girl and this room remains empty. She was sent to be with the angels at only 21 weeks gestation.

Her name is Chloe Fay Mason. She is the daughter of Troy and Zena Mason and although you can't physically see her in our arms she existed. She was 26cm the same length as a big cordial bottle. She had my nose and the rest of her was her daddy. She had long feet and hands, little specs of blonde hair and she was ours. Made with love! And certainly missed already.

On the 10th of December we went for our 20 week scan (5 months) right on Troy's birthday.What a cool present this would be to find out if our baby was to be a girl or a boy right?? We're in the "safe" zone what could possibly go wrong. The ultrasound person couldn't tell us the sex though he did mention that the baby yawned and waved at us, he failed to mention why he was paying particular attention to her spine and brain, he was actually silent the whole way through. Little did we know that this was the start of something much bigger.

We were surprised when we were called into Mater hospital on the 14th December and this is we're we would be told that we we're having a baby girl and than hit with information that our little Chloe was not well. She had Spina Bifida, Hydrocephalus, Chiari Malformation, Arnold Chairi 2.

What this basically meant to us without a doctors degree is she had a lot of spinal fluid on her brain (lemon shaped head), they could see issues with her spine and an open pocket on her back exposing her spinal cord, this pocket normally closes off during the first few weeks of being conceived. We were told if she were to survive (they weren't sure) and even make it to full term she would be straight into the operation theatre at not even a day old to have a permanent stint put into her brain to drain the fluid build up that she would forever have, she would then go into an operation to close the opening on her spine to stop her exposed spinal cords from showing and getting infected. This wouldn't fix the problem though the damage already happened when she was 2-4 weeks gestation. Although some might live with this, their story is not ours and we're all not the same.

We walked into that room wanting to find out the sex of the baby and walked out with a heavy heart and what felt like a house sitting on our shoulders. The doctor told us the outlook on her life would be grim.  She would be brain dead, she wouldn't be able to walk, we would be changing nappies for the rest of her life and she would be in a wheelchair.  The doctor gave us two chooses 1. medical termination or 2. we continue on and "if" she makes it full term we would have support. I used to think the hardest decision I would have with a child was what school they would go to or whether or not to breastfeed. But choosing whether your child should die or stay alive is by far the hardest!

We waited for the doctor to write up all this information in a room full of happily expecting pregnant ladies but we were distraught, our brains were going one million miles an hour and we still had to drive home. When we got home we were silent we had no idea what to do.  Googling what we had heard had never seemed so important and some how Troy and I had to come together in the end to be on the same page. I searched spina bifida pages and I found all the fabulous stories of the children who have parts of Chloe's diagnosis but what I had to realise is everyone's stories are different and no one shares the "terrible" stories. What heartache the parents went through or what the child had to go through. We just hoped the doctors weren't incorrect.

After many consultations with doctors and lots of tears we chose to take the pain now so our Chloe didn't have to. We didn't want to bring a child into the world just to have her exist without living. Would she even know that we existed? What life would she have? The guilt we live with everyday would never be as painful as it would be to watch as she grew without "growing". I've been in retirement homes and I've seen young people in here who can't fend for themselves is this what she would be like? A board of doctors had to approve our decision and when they did I was admitted to the hospital it was so close to Christmas. After waiting and contractions after contractions I went had Chloe via L&D the morning of the 19th December (right in between Troy’s and my  birthday) with limited pain relief - I felt I needed to take some pain for our little girl. And I will tell you now the labour stories people gave me when I was pregnant will never scare me because nothing can quite prepare you for birth of your baby let alone to a little angel. 

When little Chloe was put into our arms we couldn't celebrate because this is what ended her life,  she didn't cry, she didn't move, she was cold and we were numb. We spent a full day with her, dressed her, gave her kisses because she was our beautiful girl and this would be the last time we would ever see her and those moments will have to last a lifetime.

She had the obvious signs of her diagnosis, a lemon shaped malformed skull and the spina bifida sacral lesion on her back. Everything else we were told of would have to wait till the autopsy was done. We can't get any of those moments back but we were lucky enough to get precious photos of her from heartfelt photography so we can never forget her face. She had family and friends visit her as well as flowers and cards from beautiful people across the state. Chloe got cuddles from her aunties and uncles and grandma.

Every day after we woke up and we wished it was all a big nightmare I would look down at my tummy and see a belly that was empty. I only recognised her movements after she was no longer in me. If going through labour wasn't enough, your hormones are so messed up and to make matters worse the breast lk decides it might pay a visit.

Life sucked completely for the first month after she was born. Even though you have just had a baby people fail to realise that you should be taking it easy because there is no physical sign of a child. Conversations are awkward because no one knows what to say and everyone looks at you with sad eyes. The simplest of tasks are a big effort and some days I felt like I was a two year old chucking a tantrum. I couldn't have got through with my amazing husband. 

Chloe was in getting her autopsy done and this would take 3 weeks. On my birthday we were asked if they could keep her brain and spine as they were running behind. We told them to take their time in hope it might shed some more light. We never imagined our pregnancy to end this way, after all no one shares the terrible stories.

Each week was something new first we had to find items to have with her for the cremation, visiting her in her itty bitty coffin with all the special effects that grandmas and aunts had provided (photos of her cousins, letters and drawings) her birth certificate arriving, her ashes, her death certificate, cards in the mail, donations and preparation for her ceremony. When would getting all these triggers end.

It was then time we had to go back to the same hospital we got our Chloe's diagnosis from. We talked to the doctor about everything that had happened. We were advised the likelihood of this happening again would be very unlikely. I asked questions like; the fact that I had a doctor’s appointment prior to trying and they didn't say anything about my bloods, I took my prenatal vitamins prior to convincing isn't this meant to prevent it? We ate well, I lost 20kg, didn't drink, my husband quit smoking - why did this happen… Apparently 70% of NTD can be prevented by your pregnancy supplements the other 30% , they call it "just one of those things". I've had my folate and folic acid tested and I had a higher range in my system which is subject to nine months of tablets and now I've had to add in ten times the amount through a jar of $5 pills which we think mothers should just take regardless!

We had a ceremony for Chloe on Australia Day at the place where we got married. We had a balloon to release, but Chloe decided it would be better to go earlier and it was released in the car. Chloe had around 30 people come (more would have) and we had a lovely celebrant say some beautiful things. We had some tables set up with some of her special effects, her birth certificate, her pictures, teddies, funeral books and memory jars made just for her. We then spread a small amount of ashes in the ocean and blew bubbles. It was perfect and heart-warming that we had so much support from our amazing friends and family.

The situation we have been in has been very $h!T, my husband and I are stronger than ever, we have learnt a lot about true friends and family, the support we have received off of the "Facebook world" has been nothing short of amazing, even when I'm having tantrums. The messages, the calls, the cards, the flowers, the thoughts and the kind words. The support from our work, the assistance from the hospital and the doctors it makes us feel so lucky and appreciative in a time when "luck" isn't in our side.

We personally wouldn't be where we are today without some key people in my life, new and old virtual and real. I've met some people from all around the world on support groups for people in this terrible club. In a time when you feel so alone you start to realise that you are not. To help my healing I donated my wedding dress to angel gowns to make little angel dresses, I edited photos of other angels and put them into special wall features for their parents. I've seen so much pain on these groups and if I could have any super power it would be to give everyone's babies back and let them have them forever! When I hear people in the normal world complaining about something to do with their child it does make me sad. This is because little things like being up late at night to crying, or teething, or fevers is a luxury in my new world these things are things that mothers in this "group" would die to have. Hug your children and loved ones tightly and please enjoy these precious moments. All kinds of tragedies strike when we least expect it and life shouldn't be taken for granted.

My husband went back to work in the new year and I was back at work on the 15th Feb which was 9 weeks after her birth. Australia is amazing for recognising her birth and allowing me access maternity leave, however had she been 19 weeks instead of 20 we wouldn't have been so lucky. Which makes me sad. I've had the privilege of seeing many beautiful angels at all gestations and I can tell you a baby is a baby as soon as it's conceived! The emotional turmoil that is left whether for miscarriage, stillbirth, being in NICU or medical termination is huge but to not be told that they exist prior to 20 weeks is just messed up.

What hurts more is when people use words that make these big events in our lives less significant think about what you say to people before you say it! I used to be a big "positive" person! You would hear me say everything happens for a reason but how can I say that now? Someone in the universe chose to give Chloe a terrible diagnosis, made us go through labour, death, and organising a funeral so I can learn?? I’d rather not have the lesson thanks... What child would you give up to learn a lesson in life?

If your still reading thank you! Chloe's story will only close, when we allow it to and we won't. She will always be our first baby girl.. our child! Just because she isn't here doesn't mean she doesn't exist. She will be remembered until the day we die. We waited ten years to make a perfect life for her.. little did we know that nothing on the outside could have helped what was going on inside. We have no regrets with our decision the only regret we have is not spending time with her in my tummy and worrying about others too much. This year we are being selfish in some instances and not feeling guilty for it. "Fit our oxygen first, before helping others".

We ended a very much wanted pregnancy.

We have changed, parts of us are broken but we're survivors and we've survived so far.

The end.                                                                                 Zena Mason

If you require support after reading this blog please contact

Sands on 13 000 72637

Zena is a full time administration officer, wife and mother to 4 furry animals as well as one beautiful angel called Chloe. This journey has been hard but she says that she has met some strong women and made friendships with people from across the world.

She's on a mission to not let Chloe's memory disappear she was a very wanted child for Zena and her husband. Zena is very open about Chloe's story because it’s such a taboo and it's important to raise awareness for all mothers who have lost a child but specifically through medical termination. She says "if we can raise awareness we will then create more supportive friends and family and hopefully one day we won't need to suffer in silence and feel so alone".

Keeping Charlie’s Memory Alive by Anita

Anita Marshall shares Charlie’s story and how running has become a special time for her; ‘Charlie time’ and a way to keep his memory alive. It has also allowed her to raise funds for Sands and help other parents in a similar situation.

Sands Australia has become an integral part of mine and my family’s life since Charlie was stillborn on July 30, 2002. 

Thirteen and a half years seems like a long time and it is, but Charlie is always with us as are the memories of the day life changed forever. 

My husband and I had been trying to have a baby and after a bit of help, became pregnant for the first time.  At the time, I worked in a maternity hospital and was also a trained nurse so was surrounded by the healthcare system and babies.  The pregnancy was smooth with no hiccups and everyone at home and work were excited to meet our little boy Charlie.  We knew it was a boy and his name was Charlie.  I had just finished working with the plan of having a few weeks off to rest and nest at home.  I saw my obstetrician in the afternoon of July 29 and heard Charlie’s heartbeat and all was fine “see you next week for your delivery” he said as I left the clinic. 

That night I felt uncomfortable but I was 37 weeks pregnant so naively went about my business. As the night progressed, I started to feel unwell and had what I thought must be contractions, so off to the hospital we drove, excited that this might be it. On arrival we were placed in a room to be checked and see what was going on.  Like so many before us, Charlie’s heartbeat could not be found and in that moment I knew enough to know something was wrong.  None of the nursing staff could find his heartbeat and our obstetrician had been contacted.  We were moved to our obstetrician’s rooms for an ultrasound, just him and us, where it was confirmed that Charlie had died.  We had only heard his heartbeat that afternoon….what could possibly have gone wrong? 

In the early hours of July 30, Charlie Marshall was born naturally and was 7.5 pounds and looked like nothing was wrong except everything was wrong as he did not take a breath. 

Apart from my brother, who was younger than us and had no children himself, we found ourselves on our own. We were living interstate so family and friends were contacted and were on the next planes to be by our side and meet and hold Charlie.

Life changed forever that day, not only for us but also our family and friends.  They surrounded us with love and support and following Charlie’s funeral, the first of what has now become a tradition ‘Charlie Party’ was held at my brother’s home.  All the food and drink had to start with ‘C’ and everyone there wrote their special note to Charlie on a balloon that were all released together.  This tradition has continued and has now also been embraced by Charlie’s brothers – Cooper, Archie and Parker! 

Charlie’s three brothers were all born prematurely which was certainly a highly stressful number of years. 

It was after having our four sons that I decided to take up running and it quickly became my ‘Charlie time’.  One thing led to another and I started entering fun runs and fundraising for Sands. Sands had allowed me to grieve at my own pace, feel normal around others and piece by piece put life back together.  It is a way I can help Sands and other families like ours. 

I wanted to mark Charlie’s 10^th birthday, so my close friends and I created Team Charlie and ran the Melbourne Half Marathon in 2012. We managed to raise $25,000 for Sands, it was such a fulfilling and meaningful achievement. Then in 2015, the year Charlie would have become a teenager, we decided to commemorate it by taking part in the ultimate run, the New York Marathon, raising over $9,500.  Running and raising money for Sands not only supports an organisation that gives so much to others but also keeps Charlie’s memory alive for all those around him. 

Losing your child leaves you in pieces but Sands is part of the team who help put you back together all be it in a different way and for that we will be forever grateful.

Anita Marshall 

If you are inspired by Anita and want to fundraise for Sands visit http://www.sands.org.au/get-involved/fundraise for ideas on how you can make a huge difference.

Stages by Jess L

The following was a piece Jess wrote many many months ago. Reading it back now is hard because she remembers how she felt when she wrote it, dark, betrayed, hopeless…she still has those days now though they’re further and farther in between. She's posting this because she think it’s important to reflect on your journey, even the bad moments and while now at almost 12 months after their loss they are still no closer to expanding their family,she thinks it’s still important to share this. This piece is in no way a reflection of who she is or how she feels 99% of the time.

I’ve decided to write about my stages of living with grief. I’m not sure if/when I’ll ever post this….I suppose it depends on the outcome.

I never wanted to be anything other than a Mum, literally! Sure, now I have a few ideas as to what I’d like to do when I ‘grow up’ but my whole life, that has been my one goal. I’m so very fortunate to be a stay at home Mum to my now 2 year old boy Adam, but it’s 2015. I turn 30 in 2 months!!!

I had always planned to be DONE by 30. 2 or 3 kids under my belt, looking far into the future beyond kids. But now, 7 months (today) after the loss of our daughter at 39 weeks, I’m stuck! I spoke earlier about stages, I call this stage just what it is, Trying to Conceive.

Since our angel was born we agreed that we wanted to try again. As scared stiff as we are about what could happen, bottom line is we wanted our family! Moreover, a sibling (or 2) for our boy. I’ve been an avid blog/article reader since Emma was born. Some have lifted my spirits, some broken my heart all over again. There seems to be a lot of material out there for pregnancy after loss but what about try to conceive? What about when you feel that getting pregnant again will help you heal, help you deal better with all your friends new babies and the overabundance of pregnant women wherever you look!! And what if you can’t have that? What if what you wanted was taken from you as was the ability to conceive again? I’m not saying this will be the case for us, we have terrific doctors who are helping us at every opportunity. I’m positive it will happen eventually but for now it feels like the clock is tick, tick, ticking away.

When some friends announced their pregnancies shortly after Emma was born I was upset but always thought, ‘I’ll be pregnant again by then anyway, it’ll be ok.’ But one will be born this Friday and another in a couple of weeks….and here’s me, 7 months without my baby in my arms or in my body. Today feels hopeless, like nothing matters and it never will. Stay tuned for stage 2….

Jess

If you require support after reading this blog please contact

Sands on 13 000 72637

Jessica Lawless

Jessica lives in Victoria. She is the wife to Shane and a Mum to 2 beautiful kids - Adam, nearly 2 and Emma, born sleeping August 2014.

I like to practice yoga, cook, read and spend all my time being a SAHM with Adam. My family and friends are my whole world, there is barley a distinction between the two.

I hope by being so open and honest about my experiences I can help raise awareness and provide support for others.

A Letter to My Daughter

Genevieve shares with us the letter she wrote to her daughter, Amalie.

"You are my rose, Amalie. My perfect little daughter. You made me feel whole… complete… for the first time in my life.  You were the piece of the puzzle I didn't fully understand how much I was missing having - the piece that rendered almost everything else in my life insignificant in comparison."

A letter to my daughter (read aloud as we planted a tree in her memory)

My darling daughter Amalie,

Thank you.  Thank you for coming into my life and bringing me more joy, peace and fulfilment than I thought possible, albeit only for six short months.

I felt you move inside me, and part of me wished I could kept you there, protected, forever.  I would have done anything, anything at all if it meant harm did not befall you.

But alas your life journey was tragically short, nipped in the bud.  I was lucky. We spent several months together. The rest of the world only knew you for a few short days.  But the ripples from your arrival and departure are still being felt, by so very many people.

There have been trees and flowers planted in your name all over Australia and beyond. Like this one. They will grow and flower, celebrating your life. And my hope is that as they are tended, they will not induce sadness in those gardening, but instead, gratitude and wonder at the blessings your short life has reminded us we have.

Your Dad, Nanna, Granddad and I will feel pain too, that is inevitable. Pain that we will never get to see your first steps, your first day at school, your first love, your first heartbreak. Pain that you will never know much love you can feel for a child growing inside you.

But pain is not only inevitable but invaluable for a full and fulfilling life.  The lows give life contrast and context.  They help breed resilience, empathy and humility, and these are some of life’s most important skills. So much comes down to attitude.

I won't complain because roses have thorns, but instead rejoice because thorns have roses.

You are my rose, Amalie. My perfect little daughter. You made me feel whole… complete… for the first time in my life.  You were the piece of the puzzle I didn't fully understand how much I was missing having - the piece that rendered almost everything else in my life insignificant in comparison.

I understand so much more now- about myself, about motherhood, about the world.

And for this, I will be eternally grateful.

All my love,

Mummy.

If you require support after reading this blog please contact 

Sands on 13 000 72637

Genevieve Yates

Genevieve is a GP, medical educator, medical writer and musician from the Northern Rivers region of NSW. After a long and difficult road to motherhood, her beautiful daughter, Amalie Ella, was born in December, 2014.  Tragically, Amalie died of neonatal sepsis after only four days.

Through her clinical work, teaching and writing, she hopes to she can use her experiences to help support both patients and other doctors in managing the complex emotions surrounding fertility issues and perinatal loss, and also encourage more open discussion in the general community.

Her website can be found at: http://genevieveyates.com

Levi's Story.....

Adin shares her story about the birth and death of her precious son, Levi.

"Just recently I read an excerpt contributed by Deborah L. Davis PhD from 
the book "Never Forgotten".  She wrote "it may help you to remember
that you were in the impossible position of having to 
choose between terrible and horrible.” I have a profound connection 
with this statement, and it provides me with bittersweet comfort."

I was always afraid of becoming a mother because I was scared my baby might die.

There wasn't one thing that particularly scared me. I was scared of the “what if’s?” In my head I resolved to the fact that every prospective parent must worry at some point about these things. It comforted me to know that over one hundred billion people have ever been born, and of the seven billion on the planet right now, the average life expectancy was about 70 years of age. Millions, no, billions of people do this parenting thing every day. So surely I could?

So, I did.

And guess what? My baby died.

Actually, that’s a selfish thing to say.

Our baby died.

My husband lost his baby too.

Our first child, a son, Levi Duxbury Hewat was born on at 4.58pm on Saturday 8 November 2014 at 38 weeks exactly, and was 2.92kg and 49cm of perfection.

Levi died six days later.

Surprisingly, when I fell pregnant the fears I had weren’t really bothering me and we had 38 weeks of joy, excitement and anticipation. I was fortunate to be one of those enviable women with a ‘breezy’ pregnancy (thank you, Levi).  

I was due to finish work on 7 November. Levi had other plans. My membranes ruptured on Thursday 6 November.

We went to the hospital for a check-up that afternoon. It seemed my membranes hadn't ruptured completely, and all was looking OK, so I was given the option to join the queue for an induction or go home to await the natural onset of labour. We chose to wait and get one last good night’s sleep in (Ha! We didn't sleep a wink). We were advised to return to the hospital the following morning if nothing was happening. Apparently the vast majority of women will go into labour naturally, and are likely to give birth within 24 hours of a rupture. I’m one of the minority.

We returned to the hospital on the Friday morning. Again we had the option to join the queue for an induction that day or go home to await the natural onset of labour. This time we chose the induction.

The labour was long and difficult: medical staff struggled to insert the cannula; nine hours after contractions commenced I requested pain relief and it made me vomit (hard to do ‘nicely’ when you’re contracting); several hours later I opted for an epidural. The first attempt resulted in a dural tap, so the anesthetist gave it a second go. A short while after the epidural kicked in there was a prolonged fall in Levi’s heart rate and I was being prepped for an emergency caesarean. Levi’s heart rate recovered, and labour continued as before. Late into afternoon I was able to start pushing. Over an hour later the doctor was called to perform a vacuum assisted delivery. Around fifteen minutes later, our Levi was born.

After the birth, Levi was administered oxygen. Eventually, he was placed on my chest for a few minutes. He had big, dark eyes, my lips, and his Dad’s dimple. He is the cutest baby I have ever seen. Because Levi was administered oxygen, he was going to the special care nursery for observation and I was going into the theatre room to receive a blood patch following the dural puncture.

While Levi was in the SCN staff saw him have a seizure so he was moved to the Neonatal Critical Care Unit and was being monitored by an EEG machine. The second time I saw my son he was covered in wires. He was in an open crib so whilst we were unable to cuddle him we could gently cup his feet or hold his hand. He was to be given an MRI and a lumbar puncture to determine or rule out possible causes of the seizures. Throughout the next 48 hours, my husband and I along with our family members would sit with Levi and wait for updates on his condition. The seizures seemed to have subsided, initial blood tests came back clear, the EEG and the majority of the wires were removed. The lumbar puncture however wasn’t successful and he was still waiting for his MRI.

By the Monday evening, and throughout Tuesday, Levi’s condition was stable, or at least hadn't regressed. In fact on the Tuesday evening, the clinical nurse was going to arrange for us to have a cuddle. The nurse told us to go and have dinner and by the time we finished, she would get him ready for to nurse. In the time it took to have dinner Levi’s condition deteriorated. I can’t recall exactly what happened, but we weren't able to get our cuddle with him that night. They tried another lumbar puncture, but again it was unsuccessful.

The following day was tense, and they were hoping that the MRI would go ahead. The doctors felt that Levi was battling an infection and more seizures were visible. They suspected Levi had E.coli which more than likely meant he would also have meningitis. As such, they began treating him for E.coli and meningitis. That afternoon they took more blood cultures and put Levi back on the EEG machine for some testing before he was finally taken for his MRI.

It was later confirmed that Levi had E.coli and the strand of E.coli he had was resistant to the usual E.coli medication that is prescribed. He would still be treated for meningitis, however they were unable to confirm or rule this out due to the unsuccessful lumbar punctures. A neurologist also confirmed that the lesion on Levi’s brain was the result of a stroke, but they were unable to confirm if it occurred in utero (causing my membranes to rupture), during labour, or was exacerbated by his vacuum delivery.

I was hoping the first time I had to write out Levi’s name was on his birth registration. Instead I was  days into motherhood and filling out his details so he could receive blood, platelet transfusions, further brain testing, and various other interventions. As it would happen, we would sign and pay for his funeral before we would lodge his record of birth.

It was apparent that Levi’s infection was taking over his body. His blood wasn’t clotting properly and the platelet transfusions weren't working. The E.coli, which was septic, was compromising Levi’s organs, and as such he was put on further support. He was being administered a number of medications to combat the infection and seizures, and as a result his body was becoming swollen. The seizures became more apparent, but no one was sure if that was a result of the stroke, or the infection taking over his body, or both.

Just recently I read an excerpt contributed by Deborah L. Davis PhD from the book “Never Forgotten.” She wrote “it may help you to remember that you were in the impossible position of having to choose between terrible and horrible.” I have a profound connection with this statement, and it provides me with bittersweet comfort.

The doctors conceded that Levi was receiving the maximum dosage of medication that his body could handle. His seizures were occurring almost every minute and were distressing to witness, and we was becoming unresponsive to stimuli.

The afternoon of Friday 14 November 2014 my husband and I made the decision to withdraw Levi’s life support.

We had time to notify our immediate families, enabling those who were able, the opportunity to say goodbye (and hello in some cases). The hospital arranged a blessing and we were fortunate to have a volunteer from Heartfelt come and take some photographs.

When the machines were turned off I got to hold Levi for the second time, but my husband got to hold his son for the very first time. We held Levi; kissed Levi; talked to Levi; bathed and dressed Levi (we were terrible at it); and held him some more. We had the opportunity to say good bye and tell him how much we loved him. We are very thankful for that.

Levi had been born, lived, died, and farewelled all before his estimate due date arrived. It’s been almost six months since then. My husband and I have our daily memorial rituals that keep him alive in our hearts and our home. We’ve had help and love from family and friends, and sought help from organisations such as SANDS and SIDS and Kids. We just want to live a life that honours Levi and makes him proud of us.

In a couple of weeks I’ll be running in the 2015 Mother’s Day Classic. When I was pregnant the 8km fun run was my personal ‘benchmark’ event to aim for in my post-natal fitness quest. I was going to push Levi around the course. Exercise has been a big part of my therapy, and as it turns out, Levi’s going to be the one pushing me.  

By Adin  – Levi’s Mum

27 April 2015.

If you require support after reading this blog please contact

Sands on 13 000 72637

Adin Hewat

Adin loves camping, the beach, travelling, quizzes, puns, (bad) dancing, (really bad) karaoke, and shamelessly laughing at her own jokes.  She hates clutter, is scared of dogs, won’t eat fruits touching and struggles to swallow tablets.  Adin is a wife to Adrian and a Mum to Levi who passed away in November 2014 at six days’ of age. She currently lives in Brisbane but supports NSW in the State of Origin

This is not my life.

One of our bloggers, Jess, has shared her feelings of suddenly living a different life the day her daughter died.  How everything she dreamed of when she was pregnant is now lost in another life.   

If you would like to talk to someone about your experiences, feelings or emotions, please know that Sands Parent Supporters are available 24/7. Details can be found on our website here.

Imagine you are a beautiful young woman, you are about to graduate university and there is an amazing job waiting for you. Your life is perfect, and the whole world is ahead of you. Then one day you wake up and you are broke, living on the streets under a cardboard shelter. You have the same name, you are the same person, but you are living a different life and you don't know how you got there.

This is what if felt like the day we lost our daughter Isobel. I was still me, but it wasn't my life anymore, and every day since has felt the same.

It starts the moment you leave the hospital, as you walk silently through the doors out into the day, emerging as a person you don't recognise. Your empty arms ache as you walk past the couple packing their new baby into their new car seat, and you imagine them driving home at 20km/h while peeping into the back seat every second and sometimes more. But you can't even look in the side mirror, fearing the reflection of an empty back seat staring back at you. This isn't your car, it can't be. The car you bought 9 months earlier with the extra safety, extra seats, and with extra height to make it easier to get your baby in and out. Instead this car was empty, it had no life anymore.

You sit alone in the backyard feeling tortured by the silence of your house, desperately wanting to hear a baby's cry, but instead you hear the children next door bursting out into their yard to play. You sleep in till 10:00 but you feel cheated by what used to be a pleasure. There are no sleepless nights or tired red eyes, as much as you wish for them every morning at 10:01. But the undisturbed sleep does not give you the extra energy it should. You lie in your ruffled sheets, your teeth feel furry and you're hungry, but you still can't move. You know the silent empty house is waiting for you outside the bedroom door, most especially that room you painted a few months ago. The room with the pretty pictures, the pram and cot you spent hours putting together, and the draws full of tiny clothes that will never be worn.  


Leaving the house is no escape. Walks to the beach are haunted by mothers groups taking advantage of a warm day outside with their babies, or the fitness mums power-pushing their prams or the mums teaching their toddlers to ride a bike. For the first few weeks you can't even look at them, you simply walk at a faster pace to pass them quicker, and you keep your head low so they can't see your tears. But after a while you learn to lift your head and catch their eye, that's when you notice the look on their face. They are thinking how lucky you are to have the free time to walk alone on the beach. How lucky you are to not have a heavy pram to push. If only they knew your pain, you think to yourself, if only they knew how much you would give anything just to push a heavy pram or sit on the shady lawn and boast about your daughter being in the higher percentile for height. The supermarket, the shopping malls, the train stations; everywhere mums are being mums, but you are just you, lonelier than ever.

You are thankful for the government cheques you are still eligible for, and you enjoy seeing "parental leave" on your fortnightly bank statements because in that small way you fit into a mum's world. But eventually the assistance will run out, and you won't have any choice but to go back to work. The first day is tough, you try and motivate yourself by doing your hair and makeup and wearing your nicest work dress, but the truth weighs you down - you shouldn't be going back this early, you should be at home with your baby. You check your Facebook in between work emails, and see new mum's posting monthly birthdays of their babies, 2 months, 3 months, 4 months, it's all going so fast they say. But here you are, at work, knowing a lonely house is waiting for you when you leave.

Friends who were pregnant around the same time begin to have their babies. Their healthy babies. You receive the arrival message, the type you never got to send, and reading the words "mum and bubs are doing well" feels like razor blades in your heart. Why does it seem so easy, and why did you fail? You picture them going home with their new baby, scared they won't know what they're doing, changing one hundred nappies a day, getting no sleep for the first few weeks and wishing for just 20 minutes of uninterrupted rest. They share their complaints about exhaustion with you, but their life is everything your life was meant to be.

The only thing that keeps you going is your hope that one day you will find your life again.

                                                                                             Jess

If you require support after reading this blog 

please contact

Sands on 13 000 72637

Jess Schulz

Living in quiet beachside Adelaide, Jess is a fundraising officer for Motor Neurone Disease SA, freelance graphic designer, and social blogger. Married for 5 years (together for 12), Jess and her husband experienced the saddened loss of their first child in 2014 at 40 weeks. Their daughter Isobel Lola, passed away 6 days after she was born. A perfect pregnancy ended with a cord prolapse during labour, and now Jess and her husband are walking the road of grief while trying to survive each day without their Isobel. Love, hope and support are the essence of their survival, and Jess has chosen to share their story on Sands to hopefully support other bereaved parents walking this road too.