Monday, 4 May 2015

Keira's Song

Valerie is sharing her story with Sands with the aim of opening a window into the experience of stillbirth.  Her precious daughter, Kiera was born 2 years ago on May 4th and she wanted this to be a gift to her.

"Your body slipped into this world at
6.10 am Saturday the 4th of May 2013 
just as the birds were waking.
The silence upon your arrival was deafening  
but your birth was beautiful."

We were always going to have 3.  I've never been surer of anything.  From writing our wedding vows  and even during my labour with your second sister Isla ( who must have known also because right from a toddler she often talked about a baby sibling)  I just knew our family wasn't complete without you – our number 3.

I knew right from the moment of conception - from the first  flicker of your earth song, you were finally joining us, I didn't really even need to take a test but I did anyway just to see those two pink lines one final time.  I was Happy! Excited and nervous too - but so so happy... to  greet my final pregnancy journey, and babyhood - with you.

My pregnancy with you felt different to both your sisters right from the very beginning.

Perhaps because I was older this time? Perhaps because we had so recently been through a very stressful period of our lives with the Christchurch earthquakes, and the upheaval and transition of moving to Western Australia?  Or maybe just maybe you were sending me little warning signs all along - that our journey would be brief?

Sometime around 10 weeks I began to feel your first tiny fluttering's, the primitive beginnings of your own unique language through which I began to know you. Your patterns of wakefulness, positions you liked and disliked, sounds and people that soothed you, music that you liked, loud noises, ultrasounds and other monitoring that scared or distressed you. Whenever I spoke directly to you - you ALWAYS without fail answered with a reassuring kick or bump.

 At 12 weeks Daddy and I were so excited to see you on our very first ultrasound scan – there you were on the screen so infinitesimally small yet perfectly formed!  We marvelled at your tiny perfect fingers and toes, and your little heart pulsing so fast. 3 days later the Dr asked to see us, it was disquieting when the receptionist refused to divulge why.

We learned at that appointment that you were considered high risk for Down Syndrome. 1:132 - were your statistical odds.  Daddy and I were shocked and surprised, which led us to research, question and deliberate on the statistics, the syndrome and further testing procedures.  Ultimately we decided it didn't matter to us if you had DS, we just wanted to know one way or the other to prepare ourselves. So four weeks later at 16 weeks gestation we had an amniocentesis performed at King Edward Memorial Hospital.   The Specialist obstetrician who expertly singlehandedly carried out the procedure told me you were bouncing up and down on your head the whole time!!!  24 hours later  preliminary test results showed you were a chromosomally perfect little girl!  Finally we felt we could relax and enjoy the rest of our pregnancy and prepare for your arrival earthside.


Christmas Eve 2012  I saw you again  - a routine anatomy scan showed you to be a busy robust healthy little baby.  Santa came and left your first Christmas present - the softest sweetest little bunny with silk edged blanket. Your big sisters loved that!

You were very aware of your sisters - particularly Alena. Whenever she rested her hand or head on my belly and spoke to you - you always kicked and wriggled right back - every single time!  Whenever they put the Swan Lake Ballet DVD on and danced - you danced too. At swimming lessons you even seemed to swim when they did!  Often it seemed their noise and chaos would lull you off to sleep.  Both of them were so excited you were on your way, they made so many plans for you...

We began to make a physical space for you in our lives - a nursery of sorts.  I really relished the experience, and knowing it would be my last, chose carefully.  Bizarrely a series of strange incidents ensued over the selection, purchase and construction of your cot -  which eventually (out of pure frustration) had me ask Daddy if the Universe was trying to tell us something?  The fact that I even said that gives me chills now.

Also at about this same time I was carefully considering how and what I needed to birth you in the closest possible manner -  to that of your sisters - which were both for the most part calm ,natural, and empowering births.  The public system here in WA does not utilize an LMC model of maternity care - rather teams of Drs and Midwives in very busy scheduled clinics.  This effectively means there is no personalised care - and you see someone different each visit. We were ineligible for private maternity care as we hadn't been here long enough. I was looking to establish a partnership/relationship in lieu of an LMC  and was very fortunate to cross paths with an exceptional Trainee Midwife  Steph. A mother herself, in her third year of midwifery and nursing training looking for expectant mothers to share their pregnancy and delivery journeys to help fulfil her course obligations.  I am eternally grateful for whatever force bought us together, because she was to become our rock, my port in the storm and a very special friend for life.

At 29 weeks I was diagnosed with borderline gestational diabetes.  This meant I had to tweak my diet a little and prick test my blood sugars 4 x day to make sure we were keeping healthy.  At 34 weeks we had another scan to check your growth and well-being. You were doing great - apart from an usually large chest measurement calculation which potentially meant you might be very big - or macrocosmic - which can occur with Gestational Diabetes. I never believed you were a big baby, my weight gain was minimal and tho I felt I was carrying bigger than Isla , I felt I was either the same as or slightly smaller than with Alena. I learned later I was bang on, and the scan was well out...  Another scan was booked for 38 weeks. I suppose you could say this was the beginning of the end...

Tues April 31st 2013  38 weeks and 1 day old, at 1pm was the last time we saw you alive.

It was school holidays and during the morning I had felt really anxious about having this scan - so anxious in fact I asked Daddy to drive us.  I am so incredibly glad I did now, because it was the first time we all went – Me, Daddy and your sisters. They were so excited to see you, and there you were happy and healthy and wriggling around non stop!!!

The following day I had an appointment at the antenatal clinic for a routine check up and to discuss the ultrasound.  Unfortunately neither Steph nor Daddy were able to come so I was alone. It was crazy busy and a long wait after seeing the midwife and physio but eventually I got to see the Dr - yet another different one and she was by far the kindest and most attentive. She was happy with how we were both doing until she saw the scan report.  After consultation with one of her superiors it was decided it was better for you and for me to birth you sooner rather than later as there was a strong possibility you could get stuck during delivery. If you had measured only 4mm bigger they would have scheduled a caesarean. On that basis I was scheduled for an induction in 4 days time.  The Dr then proceeded to outline all the possibilities of birthing a big baby - shoulder dystocia and all the awful things they might have to do to get you out if you got stuck.  The descriptions  made me feel quite sick and very very anxious for both of us.  Before I left the Dr asked to examine my cervix - presumably to check its readiness for induction. She also offered a membrane stretch and sweep to help get labour started. She felt sure that it would, given you were my third baby and my body was was now well versed in labour and birth.  I agreed to both simply because,  my beautiful girl, I wanted you to have the safest, smoothest, most natural entry into this world possible - and that seemed at the time like the best alternative I had.   I  was alone, afraid and not thinking clearly.


I will regret that decision for the rest of my life.
  

Afterwards I was put in a monitoring room blowing the most freezing cold air.  A staff member told me someone was menopausal and needed it that cold. I sat in that antartic room for 45 minutes on my own shaking uncontrollably.  You did not like that CTG machine and kept moving away from the probe, no matter where it was placed.  You probably didn't appreciate my shaking either.  Nearly 4 hours after arriving at the clinic I went home cold and stressed to make preparations for your sisters for sunday night as Daddy would be staying with me at the hospital.

The next day was Thursday. You were flipping around quite happily but I was feeling a bit off. I wanted to stay close to home, feeling labour would be imminent and still feeling unsettled and anxious, such a  contrast to how I had been at the end of my previous pregnancy with Isla.  Thursday evening I asked Daddy to give me a reflexology foot rub - with the hopes of stimulating labour.  We slept peacefully till 4 am when my waters broke! I was SO relieved  - you were on your way without needing the induction! How clever of us both! 

The hospital asked us to come in for a check up as soon as we were able.  9.30 am we arrived and they did another CTG - and checked my vitals. Your readings were textbook perfect!!! Mine were also good, so we chose to go home and wait for labour to begin with strict instructions to return at 4am even if it hadn't for IV antibiotics.  About  an hour after that we decided to go for a walk in a bid to get things moving. Such a nice walk (waddle) with your Daddy down to the jetty and back. I vividly remember walking back up the street towards home and feeling you moving -  I thought it strange because you usually moved most when I was still.  I didn't know it then but that would be the last time I ever felt you move.

The walk had worked!!! Soon after I was getting contractions – regularly. Long strong ones - every 10 minutes for about 45 - 50 minutes. Then everything stopped.  Frustrated by this I tried to keep moving and spent loads of time on the edge of the couch, on my knees on the floor etc to encourage you into the best possible position. You seemed 'quiet' but I felt quite  sure you were just getting ready for your big entrance into the world.   Alena wasn't home to ask me if you were moving either - she was at the zoo with Grandad Mikey .

By the middle of the afternoon I was really tired - and a little bit concerned that labour wasn't progressing so decided to rest in bed and slept. I woke when your sisters came home and Daddy was making dinner. I wasn't hungry and still felt a bit off but ate a light dinner.  By now I was growing more concerned about your inactivity. Something felt different. I went back to my bedroom for a quiet chat with you.  My belly felt different, quiet and heavy, I quietly begged for you to move for me, I told you how excited we were to meet you, how safe you were, how loved you were - I poked and prodded and poked and eventually exhaled with relief when I felt you respond. In hindsight this wasn't you - it was gravity. The reality was this is when you left us, you were already returning to source... your light, your song was ending... the autopsy told us that.  Somewhere somehow I think I knew - but not consciously. 

After an evening walk with Daddy, and your sisters, I spent the evening trying to keep warm, I was so cold and unable to identify or shake a deep feeling of unease, anticipation - something I still can't properly explain.

By 10 O'clock I was ready for bed. Once settled contractions began again frequently and rhythmically. I was so glad - it felt like we had dodged another bullet. You were not moving, I assumed because you had tucked yourself well in, in preparation for birth. I decided not to wake your Daddy sleeping so peacefully until the contractions got closer. I was still cold and began to shake - anxiety does this to me, as does a woman's labouring body. I remembered it well when labouring with Isla.  Deep breathing usually subsided it quickly but this time it wasn't working, in fact it was getting worse. My mouth was very dry despite drinking cupful's of water. By 11.30 pm Daddy insisted we get to the hospital.  For a brief moment I was overwhelmed by the feeling I couldn't move, get out of bed.  Like I was this great impossible weight.   The truth  was I was actually very sick but I didn't know it just yet...

I remember just before leaving the house I had another drink of water, my mouth felt like sand, I could hardly hold onto the glass my hand was shaking so badly and my teeth were clattering hard on its rim. I turned the heater on full in the car I felt so frozen.

A midwife was waiting for us, at first she looked cheerful, calm and relaxed - but her demeanour began to change when she noted I was unable to provide a urine sample and was shaking so violently. I was covered with a warm blanket, and she proceeded to strap the CTG monitor around us.  She seemed to keep moving it around and told me our heartbeats were mirroring. Maybe if I hadn't been so ill at that point I would have understood what that really meant?

My student midwife Steph arrived right about then.

She immediately knew from the midwifes movements, my high temperature, racing pulse and declining kidney function that things were very very wrong, I had no idea she knew this though - because she kept smiling, holding my hand and both offering words of encouragement and answering mine and the midwifes questions without hesitation.  An intern Dr came to see me and then we were moved to a delivery room, where the atmosphere suddenly swung from a quiet business like manner to an intense, strained and hurried one, I knew right then things were not good for us my darling. Time seemed to warp into alternating slow motion and fast forward all  at the same time.

There were now 2 midwives, the intern, and an obstetrician with me. I was having blood drawn and an IV iline inserted, still contracting regularly all the while. I remember a parade of tense and anxious faces, even a murmured argument between staff on the other side of the room, Daddy and Steph were my 2 constants and where I  tried to keep my focus, to concentrate, to try and think through a head full of hazy cotton wool. I was there but I wasn't - acutely aware of the increasing contractions yet emotionally and mentally detached – far far away. Maybe sepsis does that to you - or maybe it is natures protective mechanism? 

Next they needed to insert a special probe into your head to read your pulse, a horrible but essential procedure. I'm oddly  grateful you never had to feel that stress and trauma - it was agony, through a swollen infected cervix.  They made 3 attempts - changing probes to rule out mechanical failure. I distinctly remember seeing one of the midwives stand back after reattaching the cables, hands folded, smiling a little... fading quickly when there were no reassuring beeps... and it was then I knew for sure, way down deep,  Her face, my heart and soul all told me the cruel unjust truth.  The consultant arrived to conduct an ultrasound scan  - first with one machine - and then a second one.

The whole room was so still and quiet, just as you were when the probe moved over you that one last time.  My whole world shattered in the second it took for me to register your still heart. The silence broken by the consultant softly uttering that sentence I will never forget - in the most gentle way he could. "I'm so sorry but your baby has died" followed by Daddy's deep distraught sobs...

I have no idea what I said or did right then - I was in pieces, someplace far away, feeling so utterly hopeless because my womb that was so supposed to have been your safe place  had betrayed us, I couldn't save you, couldn't take away Daddy's pain or even comfort him because I was still labouring... trying to absorb the enormity of the situation,  with every contraction starkly reminding me that although you were gone, our dream smashed into tiny pieces, your physical entry to this world was still happening – Your body still needed mine to complete that.  I waited for , and fully expected them to say they would take me to theatre, they didn't. It felt like such a cruel joke that they expected me to birth you naturally, until Steph gently explained that it was actually better for the grief and healing  processes in the long term. Somehow – I was able to process that and feel grateful that was at least one thing  - the only thing I could still do for you - just as I had for your sisters.  I'm so very proud and glad I could and did.  I begged for pain relief - an epidural, anything to make it all go away. They declined explaining with the infection I had it was too dangerous to put a needle into  my spine. They gave me morphine instead.

We were transferred by ambulance to King Edward Memorial Hospital where I would be able to be monitored more carefully in the adult special care unit. Steph drove Daddy in her car. I do not know what we would have done without her!

The ride seemed quick - the morphine was taking the edge off and I felt very numb and sleepy. A delivery room was waiting for us. Such a lovely peaceful room - dimly lit, and so very quiet.  Such a welcome contrast from the bright, busy stressful room we had just left.

 The midwife - Pauline,  whom met us there was exceptional. So gentle and respectful. Her eyes so full of care, concern, empathy.  With Daddy on one side of me and Steph on the other holding my hand, talking me through, never wavering in the slightest, they both gave me the strength and courage to birth you in my own way, in my own time. It was very peaceful, very sacred, it was ours. I couldn't wait to meet you - see you, hold you, surprisingly that anticipation was as great as it was with your sisters - maybe even greater mixed with the  tiny crazy silver of hope that maybe they were wrong, and I would wake up from this nightmare after all.   I reached down and touched your soft curly hair as you crowned - lots of hair just like your sisters -how very bittersweet.   The next thing we noticed was the cord wrapped very tightly twice around your neck (I knew you had been a busy little bee in there) but were later told this was not a factor in your demise.  Your body slipped into this world at 6.10 am Saturday the 4th of May 2013 just as the birds were waking. The silence upon your arrival was deafening  but your birth was beautiful. And uneventful. No darling you didn't even get stuck like they worried you would.  The midwife handled you so delicately, wrapped you and gently placed you in my arms, and for a moment there was only you and me my sweet baby girl. 7lbs 2oz - a little smaller than Alena and a little bigger than Isla.  For the briefest moment I marvelled at your absolute perfection, kissed your angelic face and felt the same enormous surge of pride as I had after the birth of your sisters, before the force of reality finally caught up and I caved into a heaving, sobbing mess.  How on earth could this have happened? What did we do to you? Why? Why? Why? 

I held you for the longest time - still so warm from my body.  I unwrapped you and studied you carefully from your soft golden curls , your chubby little cheeks, your pretty eyelashes, rosebud lips, delicate long fingers and toes - and big feet!!! They were a surprise!  You looked for all the world just like a peacefully sleeping baby.  That Keira, was a huge comfort to me, I hoped/believed it meant you hadn't suffered and your journey home was a peaceful one.  That and knowing on your short journey here on earth that you were never alone, never felt pain, or hunger, or fear, only ever knowing warmth, nourishment and love - so much love,  is what  got me through those first agonizing minutes, hours, days and beyond. My treacherous body did not seem to realise you had gone, my breasts became painfully engorged and leaking with milk for you, along with usual birth trauma and major bruising from IV's and so many blood tests.  My arms ached so much to hold you. I cannot imagine anything more incongruous and empty than a childless post partum mother...

We know now that the pathogen we were both infected with was Golden Staph. It is commonly found in hospitals and although harmless externally it is known as a super bug internally. We don't know where it came from, why we were susceptible or why it was so aggressive.  Clearly you became ill before I did, but I had no way of knowing that. A follow up review showed that your vital signs were textbook perfect at 9.30 am that Friday morning but according to the autopsy report you were gone just over 8 hours later.  It is extremely rare antenatally in the developed world affecting less than 2% of pregnancies.  There's a sort of strange irony that statically infection was the least of our worries throughout pregnancy yet it became our biggest?  Who would ever have imagined?

Your official due date was May 15 2013 - circled in my diary in excited anticipation, I never dreamed it would actually be the day we physically parted, but somehow it seemed right.

It was a beautiful sunny day. We gave you a beautiful send off. We set you free.

Thank you for the beautiful memories we made, for choosing me to grow, nurture and love you on this brief part of your soul journey. As much as my heart aches daily for you, for us all, I also feel strangely blessed  to have travelled this journey and met some very special people along the way who have become lifelong friends. Your life and death Keira - have woven your own unique pattern into the fabric of our family. You've made us stronger, wiser, more vulnerable, more intuitive, understanding, empathetic and more able to live and enjoy each moment. Maybe that is your legacy?
So my little precious on your Second Birthday in the stars - this is my gift to you.  Your story.  Your earth song. I hope I've done you justice.

                                                                                With all my love                  
Mummy XXxx
If you require support after reading this blog please contact
Sands on 13 000 72637


Valerie O'Connor




Valerie is a kiwi girl living in Perth, married to Neil and is a devoted Mama to her three beautiful girls - Alena and Isla earth side and her youngest Keira, her angel. She is a survivor of many things including anxiety and depression, earthquakes and stillbirth. These experiences have led her on a curious and empowering journey of self discovery which she hopes will inspire and encourage others on this crazy unpredictable ride called life! 

Sunday, 3 May 2015

Choosing to Celebrate Love.

Jess shares with us her thoughts on approaching her first Mother's Day as a bereaved mother.

"As bereaved mothers we have to make too many decisions that no parent should ever have to make. So let’s make a decision for us, let’s celebrate Mother’s Day, because we are mothers too."



Through all the anniversary and festive dates of our 8 month journey, I have come to learn that the lead up is always the worst. But just like every other day, you crawl into bed as night falls and you take a deep breath, and you acknowledge that you have survived another day.

We lost our Isobel just weeks before Father’s Day last year. The upcoming event didn't even occur to us until the day we needed to refill my painkillers prescription. There in the pharmacy was a nice little display of Father’s Day gifts, a table of dad-like products staring back at us. At the time I chose to ignore it, not realising how painful those 5 minutes were for my husband, until we got home and he broke down. That was the day we wondered if we would ever celebrate a special day again.

Christmas was just as hard. We thought putting up a tree would help, and we were even lucky to receive beautiful ornament gifts for Isobel. But the days leading up to it were torture, and the day itself even worst. Friends posted pictures of their baby's first Christmas. Strangers wished us a "Merry Christmas" but we couldn't even say the words in return, we weren't 'merry', there was nothing 'merry' about Christmas to us. We put smiles on for our families on Christmas Day so they could at least enjoy it without feeling guilty, but we were heartbroken inside.

Now Mother’s Day approaches and the fear lurks in my mind - how will I survive it?

I know that I am not alone in this fear. Mother’s Day is a "trigger" for thousands of mothers out there, although one of many triggers I'm sure they feel every day; for me it's the colour yellow, her songs, hearing her name called out in the supermarket. The triggers never really stop, but the Mother’s Day trigger is a big one. For a bereaved mother, Mother’s Day is a blend of numbness, disbelief and sorrow. It feels like everything in the world is reminding you of your loss, every television ad, every display in the shop window, even the sight of every mother with their child knowing they will have the chance that you won’t have to celebrate together.

As bereaved mothers we have to make too many decisions that no parent should ever have to make. So let’s make a decision for us, let’s celebrate Mother’s Day, because we are mothers too.

I recently watched a beautiful video about motherhood by American blogger Missy Lanning. It talks about what motherhood means, and to Missy it means love. And I agree. Love is the most important part of being a mother because it is there from the very beginning and it never goes away. The moment we started trying for Isobel I felt the love for our unborn child, although it took a long 3 years; my love just grew stronger. As my belly grew I remember feeling strange because I loved our child so much but I couldn't define if my love was for a girl or a boy, it was just pure love. The moment she was born I felt instinctive love of wanting to protect her, and I always will.

This Mother’s Day I will tell the world that I am a mother. I love my daughter unconditionally, a love which grows stronger each day. I worry about her, hoping she is safe. I am proud of her, and I hope she is proud of me. I feel guilt that I am not doing enough for her, or giving her enough attention. I share every moment with her. I am her mother. She is my daughter. I choose to celebrate our love on Mother’s Day, and I hope all mothers will choose to celebrate their love with their child.


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.

Thursday, 30 April 2015

The Importance of Rituals

Genevieve shares with us the importance of rituals

"Previously, I hadn't found ceremonies around loss particularly helpful. While respecting the cultural importance and religious significance of grieving rituals, I hadn’t experienced their healing power. Until now. On reflection, I think the key for me was in the timing. "


Last century, while at medical school, I studied the various models of grief. 
here was a 5 stage model, a 7 stage model, the Kübler-Ross Grief Cycle and a couple of others, the details of which didn’t deposit firmly enough in my memory bank to now recall.

Being young and eager to know “the answers”, I asked “But which model is right - which one most accurately describes the grief process?”


Grief is messy. There is no right or wrong.  There is no neat stepwise process or clear signposts along the road.  Everyone does it differently.


I learned about Grief’s complexities and idiosyncrasies firsthand, very soon after medical school.  In the November of my intern year, my partner, Adam, died of testicular cancer. 


I continued to get better acquainted with Grief over the next 15 years, thanks to multiple personal losses, including five miscarriages.  So when I lost my infant daughter, Amalie in December 2014, I thought I knew what to expect.  But as it so often does, Grief threw me a few curve balls.  I discovered that not only do different people grieve differently, but that individuals grieve differently at different times. 


Previously, I hadn't found ceremonies around loss particularly helpful. While respecting the cultural importance and religious significance of grieving rituals, I hadn’t experienced their healing power. Until now. On reflection, I think the key for me was in the timing. 


Within a couple of months of losing Amalie, life around me had ostensibly gone back to normal. Most people were treating me as if nothing had ever happened. In a way that was good, as I didn't want to be wrapped in cotton wool, but on the other hand, it accentuated how far from normal I felt. I often felt quite isolated, cut off from the world as if I was trapped in a Perspex container watching everyone go about their daily lives but not being able to connect with them. The colour had been washed out of my life. I felt flat and empty.

Then three months after Amalie died, my colleagues organised a tree planting and memorial service.  After getting council approval, we planted a coastal banksia tree in parkland near where I live.

It was a really beautiful service. A few people talked and many people cried.  The skies cried too (a few brief showers which gave way to sunshine) and the birds sang.  I scattered some of Amalie's ashes in the roots of the tree as it was planted.  
  
It was an exhausting day but the ceremony was exactly what I needed at the time.  As well as the symbolic value, it reminded me that people really do care - the love and support by those present (in person and in spirit) was palpable, and it meant the world to me.  

After feeling increasingly disconnected, the emotional distance between me and those around me was all but obliterated.  Connection is a powerful healer indeed.


I’ve been visiting Amalie’s tree daily since the service. Visualising her ashes being incorporated into the root system of the tree as it grows and strengthens is comforting and meaningful beyond words.


I've woken up each morning since the service feeling that little bit lighter and more positive about the future.  I know there are still hard times ahead, but I'm ready to face them, knowing my family, friends and colleagues are there to help me through them and to catch me if I fall.


I still don't have any answers for my past-medical-student self, but I feel I've got to know and understand a new facet of the complex creature that is Grief, and for that I am grateful.



Genevieve


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

Thursday, 16 April 2015

Learning to live again

Fiona is realising that there is hope and that life will continue following the death of her precious Manaia: 


After having the worst possible two weeks since Manaia passed away, I saw something that I believe was Manaia telling me that he was okay. And that I'll be okay. 

I know that the journey of grief is never ending and I'm only 3 months into mine.

Whether you've lost a child through miscarriage, stillbirth or neonatal death, you will always carry that loss with you, no matter where you go.

What I've learnt so far in this journey is that although the darkness seems overwhelming and at times it feels as if the grief will consume you, you we will get through this.


The sun in all its glory will rise again and again. You will learn to live alongside the grief and with time the grief will take a minor place in your heart. You will learn to live again, to love again, to laugh again and one day you will once again feel true happiness, just like you did before your loss. For you and I that day may not be today but every day that passes, each day you survive, is one day closer to all those wonderful things.


And if you are just beginning this journey remember that you are not alone, you are never alone. There are so many wonderful resources for support, never be afraid to ask for help. 
Fiona

If you require support after reading this blog please contact
Sands on 13 000 72637 

Fiona Mataafa

My name is Fiona and I am a 23 year old first time mother who lost my only child, my 4 month old son Manaia, after 128 days in NICU. I reside in Victoria with my partner Charlie. I hope by sharing my experiences as a bereaved parent that I'm able to, in some way, bring peace and comfort to others going through the heartbreak of child loss.

Thursday, 9 April 2015

Preppie Tidal Wave

Danielle shares with us her emotions as she realises her precious son, Jasper, was supposed to start prep school.




Tuesday January 27th started out like a normal day. Rush rush, taking my 2.5 year old rainbow to Kindy, making sure we hadn't forgotten anything. The occasional tantrum on the way, mostly because he can't take his trains to Kindy. Hubby hadn't gotten back from night shift so I was doing the Kindy run alone. Driving to Kindy, I see schools open. I see children excitedly, and some not so excitedly getting out of cars for their first day back at school. I still haven't realised.


I get to Kindy; I get Harrison out of the car and help him inside. I am making his breakfast and a mum about my age comes in. The Kindy teachers start fawning over the new Prep child who used to come to the Kindy last year – “oh look at you in your new uniform – look how grown up you look! Thank you for bringing him in to see us!” And it hits me like a tidal wave. Jasper was supposed to start prep today.

I rush into the bathroom to clear my thoughts. I have to settle Harrison and get home – I think to myself. I manage to get through the next 10 minutes, made more difficult that Harrison wanted mummy to stay and read and cuddle him, but I needed to get out of there. But I couldn't hold it in all the way home. My chest feels heavy and the all too familiar and terrible ache in my heart. The ache that makes you feel like you can’t breathe or think. The ache that is physical and feels like your heart is dropping right out of your chest. I sat there and cried.


I cried selfishly at first. I cried because at first I forgot. I cried because I wish I didn't have to remember and that it isn't fair. Because I was the ‘unlucky one’ who didn't get to bring my baby home. Because after 5 years it still hurts. Because I will never buy Jasper a school uniform. But then I cried for his younger brother. I cried because his little brother will never experience the joy and jealousy of watching his older brother go to school before him. Because there will always be a big brother missing who he won’t play with – who won’t get to amaze him with thrilling stories of school and who won’t be there when his little brother also starts school. He doesn't have a big brother to look up to, to protect him.

When I pull myself together and get home, I soak in the bath and try to collect my thoughts. I think about the school we wanted to send him to and wonder how he would have coped. And the sad thing was that I couldn't imagine it. And sometimes that hurts more. I can’t imagine what he would be like today. I went on the computer to chat to a friend for comfort and like a knife through my heart I saw my Facebook feed – pictures of proud parents showing off their little prep kiddies in their new school uniform. Parents who have every right to be so proud of their children, but who unintentionally add to the pain. I had to close my computer. I couldn't interact on social media on this day.

Milestones like this hit me like a brick. And they are usually compounded by the lack of support I receive. My husband is my rock but after working night shift, I can't wake him up because I feel guilty. Many family members believe I am ‘wallowing’ and should just forget about him. It has been 5 years and I can never forget about the small little boy, who fought so bravely for life for 10 hours. I can’t simply ‘forget’ the little boy who isn't here, and I can’t put it out of my mind the milestones in life he can never achieve. Although I have a wonderful rainbow that brings me joy and heals my heart a little bit every day, he is not a replacement for the brave little boy I lost. His milestones are his alone and do not replace the milestones that Jasper should have had.

I cannot wait for my rainbow to achieve his milestones and I look forward to them every day, even if it does bring along a reminder of what we have lost.



If you require support after reading this blog please contact 
Sands on 13 000 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.

Thursday, 26 March 2015

Grief is a difficult emotion to overcome....

Karen shares with Sands her story of her pregnancy and the delivery of her precious little girl.


I found out I was pregnant late September 2014 after I had begun to feel fluttering in my stomach and just feeling "a bit off" in general. The visit to the doctor after a positive pregnancy test confirmed this and both myself and my fiancée were completely in shock, we were excited but at the same time we had just gotten engaged and were planning a year to travel. Eventually the shock wore off and excitement followed and after our first dating scan hearing our baby's heartbeat at 7 weeks, we were in love. I became incredibly protective and wanted nothing more than to become a mother to this little human we had created.

I had a text book pregnancy; I was still going to the gym personal training, eating healthily and take my pre-natal vitamins. Morning sickness was minor but managed to strike without fail at 5.00am and 7.00pm each day. I started to get the tiniest of bumps and was feeling very at ease with life.

I went for my nuchal pre scan blood test on the Monday and my nuchal translucency scan was booked for the Wednesday. I was 12 weeks 6 days. I woke up that morning and I was quite apprehensive going into the scan and was very anxious. Looking back now perhaps I knew something wasn't right but I was also excited to see my baby for the first time. We went into the scan and the sonographer was very positive and outgoing, after a while I noticed the more images she took, the quieter she became. She finally was able to get an image of the nuchal fold, she said it was slighter larger than what she had seen before and would have to talk to the doctor and come back in 5 mins. 5 mins turned into 15 and both myself and partner tried to stay positive but my motherly instinct had kicked in and I was on the verge of tears knowing something was wrong. She returned after what seemed like an eternity to tell us that unfortunately the baby's nuchal fold measured 14.7mm which was the largest she had seen and that she had found a lot of fluid in our baby's heart cavity, brain and stomach. 

She then read us our risks with the combination of my blood test and age for chromosomal abnormalities which were perfectly normal to then reading our risks for the combined scan and blood test which put us as high risk as 1 in 6. At this point I broke down and we were able to leave. I went home feeling the saddest I have felt my whole life. I was able to get into the doctors straight away as we still weren't sure what these results meant, the sonographer was not able to give any more information. 

The doctor confirmed our worst fears that our baby was severely deformed due to an abnormality with hydrops. We were told the chances of the baby surviving in utero were non-existent and that we would need to consider termination. They were surprised the baby had survived for so long. We were completely numb; my world had just come to a halt as I tried to get my head around what I had been told. I was so angry and sad at the same time, why did this happen to us? Surely there was some chance that everything would be alright.

We were then referred to a private obstetrician (even without health insurance we decided that private was worth the money for the care we would receive) who confirmed that what we had been told was true and that in his own personal opinion for mine and my baby’s sake, we should proceed with the termination. We went home and broke the news to our families who live overseas and were visited by close friends who we had told about the pregnancy, while all very supportive it did not help with the grief and sadness we were both feeling. That Wednesday night was the worst of my life, having to come to terms with what should have been the day we could spread the word that we were pregnant with a healthy beautiful baby to knowing that in 2 days time I was going to be ending its life was unbearable. But I did not have a choice; I did not want my baby to suffer anymore.

We went in for the procedure on the Friday afternoon; the nurses were lovely and very respectful. My partner was not able to be with me prior or when I got out of recovery which I was initially not okay about but strangely I was okay once I had woken up from the general anaesthetic. I had a nurse sit with me the whole time to change my dressings and talk to me which was comforting. My partner came and picked me up from the day surgery at 9.30pm and we made our way home. Once I was home I felt completely empty and the tears started to flow, I was so confused and sad all in the instant. I cannot explain the emptiness from feeling so empowered by having this little being inside you to then not have it anymore; it's a feeling I hope to not have to cope with again. I had the following week off work to gather my thoughts and heal physically. 

We chose not to name our baby that we had lost, I was not sure at the time it was the right thing for me. We found out after further genetic testing that our baby was a little girl who had been diagnosed with monosomy x or more commonly turners syndrome. We were told it was a completely random event that could happened to anyone. This helped my healing process a lot as I nor my partner was to blame, we had done everything right.

Grief is a difficult emotion to overcome, it comes as it pleases and does not go away quickly. It has been less than two months since I lost my baby, I still have my moments when I will cry or get angry or avoid people who are pregnant or who have babies. I still have times when I feel sorry for myself and think that I should be nearly 6 months pregnant right now, showing my baby belly and starting to buy for my unborn baby. I know this feeling will pass and I welcome the day that it does. I am stronger every day and realising that life does not stop has pushed me to start moving forward. I know in good faith that I will be a mother again soon and I welcome that emotion any day.
                                  Karen 


If you require support after reading this blog please contact
Sands on 13 000 72637   


Karen Mackle

My name is Karen and I am a 28 year old living in Brisbane with my partner. I wanted to share my recent experience about the early loss of our first child in the hope that people can know that they are not alone and in their time of need I hope my story will help.          

Thursday, 12 March 2015

Came to early, gone too soon...

Genevieve is a new comer to the Sands blog. Here she talks about her pregnancy, birth and death of precious Amalie.


After nine years and five miscarriages, I finally had a joyful and life-changing journey through a remarkably straightforward pregnancy last year. I had many new experiences.  I relished discovering that my clothes are too tight.  I was relieved beyond words to get the “all clear” on the 18 week morphology scan.  I discovered that, despite my best efforts, I became one of those annoying super-gushy types of pregnant women.

The most surprising aspect to me, however, was the reactions of friends and colleagues.  Without exception their responses were overwhelmingly positive and supportive, for which I was immensely grateful.  What intrigued me though is that many started to treat me more inclusively, seemingly because I was now “one of them”, a member of the “parenthood club”.  When I gently explored this with a few, they reflected that it has been difficult for them to juggle their desire to talk freely about their kids while being sensitive to my situation, and that at times it has been easier not to engage at all.  I know I've played a part in this too.  

While the drive to procreate differs between individuals, for many of us, myself included, it can be an overpowering one.  The primal reproductive instinct is at the core of many people’s sense of identity and life purpose, as well as having cultural, social, spiritual, financial and familial implications. 
The second half of 2014 was the happiest time of my life.  I was in the “club” and on track to fulfilling my lifelong dream.

But everything changed on 1st December, when a simple urinary tract infection developed into a serious kidney infection (pyelonephritis) and started spreading to my blood (early sepsis).  It triggered a premature labour and a mad rush to the nearest hospital (we were out in the desert at the time, hours from civilisation). I didn't quite make it and ending up delivering my own baby, just metres away from the hospital entrance.  That was certainly not part of my birth plan!

Considering her dramatic and premature entrance, baby Amalie did remarkably well at first.  Her birth weight was over the magic 1000g line and her vital signs were excellent.  We were cautiously optimistic.

Alas, four days later things took a turn for the worse and, tragically, Amalie’s tiny system was overpowered by E. Coli, just as my body was starting to win its fight against the same bug. 

Suddenly and cruelly, I was ejected from the green side of the reproductive fence.   

I've received amazing support from friends and colleagues, but, understandably, many struggle, not knowing what to say or what to do.  Some either resort to platitudes or avoid the topic completely which can leave me feeling even more isolated.  I've found that focusing on the intention rather than the words is the only way to shield my heart from unintentionally insensitive remarks. 

After all, rarely can a response make things better. What matters is the connection.   Parenthood club member or not, I know I need to maintain the connection with my family and friends to get through this terrible time.  And to remember Winston Churchill’s advice: “When you’re going through hell, keep going.”

RIP Amalie Ella.  Came too early, gone too soon.
I waited so long for you and had you with me so briefly, but every moment we spent together will be treasured forever. My heart is in pieces right now, but I will use the strength of my love for you to try to focus on being immensely grateful for your life rather than being devastated by your death.
You’ll travel with me forever, my darling daughter.
                              Genevieve


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