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

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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. 

A Dad's Story of Stillbirth - Barry Williams

Today I feel like sharing my story. So,  on the 23rd of August my partner Sarah and I went in for our 21 week scan. Everything was fine, great even. We found out we were having a little boy and according to the ultrasound he was normal and healthy. The radiographer decided to check Sarah's cervix and from there our life was turned upside down. She spotted something but needed a radiologist to check so a nurse went off in search of one. Soon we had not one but two radiologists, the radiographer and a  nurse all in the room. They had discovered Sarah's cervix was open; we didn't know what that meant but they wanted us to go off to the Women’s Assessment Unit to check further. Before we left, we asked and were given some information. Sarah got up to walk to the assessment unit but was promptly told she would need to go by wheelchair -  surely this was  just a precaution. 

We get to the Assessment Unit and are greeted by Ben, our first doctor. He takes a look and confirms Sarah's cervix is open; he gives us more information, he tells Sarah to lie down not sit up. Blood is taken from Sarah and we wait. Two more Doctors come to explain in detail to us what is going on and our options. We will deal with Kate for the next 3 days:  she says she is the doctor on call tomorrow and will be primarily dealing with us. They explain to us exactly what is meant by “an open cervix” and some options and scenarios. Kate is very straight forward and honest -  I like that about her. Our situation is not great, if we could make it to 30 weeks (24 - 26 weeks is safe but possible disability), then we have a chance of a healthy baby but we have a few things that may stand in our way. Kate says if there is no infection there is a chance they may be able to stitch Sarah's cervix but as it is already open it will be very difficult and may not hold. 

The results of the blood test come back and Sarah has an infection. Sarah seems healthy so it is likely the infection is with the baby, this is not good news. We cannot go ahead with the stitch as it will become a site for the infection to grow. They admit Sarah and monitor the infection levels. I stay with her but need to leave that night. I go and get her some things to stay at hospital. I cry that night, still not really sure what is going on. 

The next day I return to the hospital.  That morning, Sarah has more blood taken and we await the results from the doctor. Sarah did not sleep well on the uncomfortable hospital bed. We take comfort in each other through waves of emotion trying to make sense of what is going on.  Kate comes later that morning to see how we are, she does not have the results of the second blood test yet and has learned her lesson not to make plans without all the information. 

Finally Kate has the results of the second blood test. Strike 3 - more bad news. The infection has increased overnight significantly. There is little chance this baby will survive and a real chance it may die inside Sarah in which case Sarah will get sick. Again we appreciate Kate's honesty. She looks at us as we remain composed and says "this is not right, you shouldn't be so together". She lets us take in the news and we fall apart. We hold each other. We decide we need to do what is right for Sarah's body. We need to terminate.   Kate comes back comments that our reaction is now more appropriate. We tell her we want to terminate, she agrees it is for the best. 

There is more waiting as Sarah will take one tablet now to stop the pregnancy, then more in 2 days to induce labour. As these tablets terminate life, there is a process and paperwork that needs to be done. We just want to go home spend some time away from the hospital.

Finally all the paperwork is done, Sarah takes the tablet and we go home and begin to grieve. Sarah's sister, husband and child come to see us and we catch up with them for a while. Later that night Sarah gets pretty bad pain.  I ring the hospital, explain what is going on:  they say it could be the drug working but to monitor it and come in if it gets worse. I pack a bag ready to return to hospital. We go to bed with Sarah still getting regular pain.  At 10:30pm Sarah wakes me and informs me her waters have broken.

She is cool calm and collected, and calls the hospital, they tell her to take a shower and come in. I put the sheets in the wash, make sure everything is in the bag and generally run around in a panic. We arrive at the hospital and are admitted to the labour ward. Sarah is in pain, they give her a shot but it barely takes the edge off;  later they give her some more pain relief and a sleeping tablet. They set up a bed for me next to her and I fall asleep. At 4:10am, Sarah felt she needed to push. She wakes me up, calls the nurse and reaches over to grab my hand. Not wanting to disturb her I remain in bed holding her hand (the way she tells it, I lay there almost still sleeping). She kindly suggests I get up. I do so and sit next to her and hold her hand.

At 4:45 our child Phoenix Ian Christopher Williams is born. The hospital staff  wrap him and hand him to Sarah first, then to me as Sarah still has work to do. We both see signs of life, a little wriggle, a beating heart. We know they won't last long and we treasure them forever. The hospital staff take him, clean him up and dress him. They take many photos and hand prints. The staff  are amazing. We spend some time with him then it is back to sleep. He stays with us in our room.

We wake a little later:  now is the painful process of telling family. We break down on every phone call. We decide it is going to be easier to use Facebook. Over the course of the next few days many people come out of the woodwork sharing their story. We begin to realise how common this little secret can be. We decide to be open and public.

Phoenix stays with us that day, we love him and watch over him. He has Sarah's nose which is a blessing as the Williams schnoz is prolific. We do all we can to take care of each other; Sarah needs to stay in hospital for a day on a heavy course of antibiotics to clear the infection. I stay in hospital with her and we watch movies and cry. My Mum comes later that day (Sarah's Mum and Dad are in the country and we tell them not to come down just yet).

We decide we have kept Phoenix long enough it is time to say goodbye. We both hold him one last time and wish him well wherever he is. We cry again. Then call the nurse to take him. She tells us we can ask for him back if we need. 

We leave the hospital the next morning. It is hard to leave without our son. What do we do now? We go home and cry. There are flowers at our door. Sarah's parents come down to help around the house. We hug and cry. We need some groceries so Sarah's Dad and I go off to the supermarket. Ian goes to get some fuel while I go to the shops. I walk through the shops in a daze, I get the food on the shopping list plus extra and head to the checkout. While I wait to be served I overhear the next checkout talking about the customer’s children and how big they have grown. I begin to cry. I carry out the transaction with tears streaming down my face. I just want to get out of there as quickly as possible. So I leave without a bag of shopping. Ian comments on how two bags of shopping doesn't seem like enough for the list Sarah made. I think nothing off it I just want to go home.

When I get home I realise I am missing a bag of shopping. Sarah's Mum and Dad go back to the supermarket explain what happened, it seems someone else picked up my bag of shopping by mistake so they recollect all the items missing on my receipt and also get us flowers.

Over the next few weeks we meet and talk with our awesome friends, each time we tell our story it gets easier. We get so many flowers we run out of vases. We get out when we can and stay home when we need to. We check in with each other regularly simply asking "are you OK". We keep Phoenix's room set up and put in the keepsakes from the hospital and our friends. Our puppies look after us also. Sarah's Mum and Dad offer us a few days away by the river in Barmera and we go down to get away from things. We have good days and bad days but we have them together and it brings us closer. 

I ride my bicycle when I can. A mix of emotions washed over me on my first ride. Sadness for I will never get to teach my son to ride a bike but also happiness for he will always ride with me. I could imagine him on the back of my bike shouting "faster daddy, faster" with glee. I am glad when a SIDS counsellor told us grief is tiring and some days we are both so exhausted. 

Today was my first attempt at going back to work. Over the weekend I had some anxiety over how the day would play out, added to regular anxiety I have as a new teacher wondering if I have adequate and engaging lesson plans. Sarah and I couldn't sleep Saturday night and we both shared our concerns. This helped and Sunday night and this morning I felt fine. However as I was driving to work I broke down for no reason in particular. I decided to use today as a first step. I went in and spoke to my colleges and my home group. It helped and I hope tomorrow will be a better day. 

When I got home Sarah received a package from her cousin. They named a star after Phoenix Ian Christopher Williams in the constellation Phoenix, so I was glad to be home to see that. 

Going forward there have been good days and bad but we have faced them together. We have faced our niece and nephew’s 1 and 2 year old parties. Both of us wanting to quit work but getting through it and just life moving forward when sometimes I feel it should just stand still. 

Recently my work banded together to buy us an amazing telescope so we can view Phoenix's star. Sometimes people don't know how to react or don't react in the way you want but sometimes they do amazing things.                                                         Barry

If you require support after reading this blog please contact

Sands on 13 000 72637