To the newly bereaved parent, please know that you’re not alone.
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, we became 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. Many people are silently grieving, too afraid to let people know what is 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 terminations, the way other people treat their child as if they don’t exist weeks after they went through the toughest struggle 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. I should have a baby in my arms today. And instead we are trying to find our ‘new normal’. This story is about a time of survival, learning how strong your marriage is, courage, loyalty, friendships, love and a shitty, unfair situation.
I’m not writing it so you will feel sorry for us. We have done enough of that for ourselves but more for awareness and to #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.
Zena and Troy's babe, Chloe, "was sent to be with the angels at only 21 weeks." Image supplied
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 were faced with decision that we would never wish upon anyone. We planned a funeral when others listened to their baby' beautiful cry. 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. 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.
On the 10th of December we went for our 20 week scan, 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 were in the safe zone. We thought that nothing could go wrong.
The ultrasound technician 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. Mostly he was 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 the hospital on the 14th December. This is where we were told that we were having a baby girl and then hit with information that our little Chloe was not well. She had spina bifida, hydrocephalus and arnold chiari malformation.
What this basically meant was that she had a lot of spinal fluid on her brain, she had a 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 after conception.
We were told if she were to survive, to even make it to full term she would be straight into the operating 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 as the damage already happened when she was 2-4 weeks gestation. Although some parents 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 choices; to end the pregnancy or to continue it, knowing that if Chloe made 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 live or die 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 somehow 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 ever story are different.
Zena and Troy Mason said goodbye to the baby daughter in a small ceremony and scattered some of her ashes in the ocean. Image supplied.
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 every day would never be as painful as it would be to watch as she grew without growing.
A board of doctors had to approve our decision and when they did I was admitted to the hospital.
I was induced and gave birth to Chloe on 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.
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 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 tokens 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 hospital. We talked to the doctor about everything that had happened. We were advised the chance of this happening again would be very unlikely. We asked, 'why did this happen?' I took my prenatal vitamins before Chloe was concieved. We ate well. I lost 20 kgs, I didn't drink, my husband quit smoking.
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 items, 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 awful, but my husband and I are stronger than ever. We have learnt a lot about true friends and family, the support we have received from 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 was not on our side.
Sands – the support group for those affected by miscarriage, stillbirth and newborn death - was a great help. I was given a care pack in the hospital, which contained some useful information from Sands. I read about so many other people who had gone through similar situations on the Sands website, but one particular story stood out. This story was that of a lady called Ali. Ali’s experience was so close to what I went through. That night I felt less alone and thought if she could survive, so could I. Since then have used Sands email support and have called the helpline on numerous occasions, having the person at the other end really understand so refreshing, especially in my times of need.
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 their 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 terminating a pregnancy is huge but to not be told that they exist prior to 20 weeks is just awful. 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 you’re 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 mask 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.
Sands is available around the clock for anyone affected by the death of a baby. You can contact them on their helpline 1300 072 637 or visitwww.sands.org.au.