The story of Vivienne Rose

It was March 2015, and I was about to go for a 15 km run as I was training for a half marathon, but today, something felt off. I remembered the pregnancy test in the cupboard and thought I should quickly do one, even though I’d only been off the pill for two months I had a strange feeling that something felt different. It was positive straight away, after a quick trip to the doctors and an ultrasound, we discovered I was 6w3d with our first child.

When Michael and I first talked about having a baby, I never felt 100% ready. I remember a conversation we had and I told him childbirth scared me, and I had a fear of dying. It sounds irrational I know, but little did I know my instincts were possibly telling me what was ahead of me.

It was around week 20 of the pregnancy that I started to have some strange symptoms but I just brushed them off as normal things that happen in pregnancy. I had lots of swelling, not just in my feet, but my hands and face and what I thought was morning sickness had come back again. At a routine doctor appointment in week 21, my blood pressure was 150/100. I brushed it off to the doctor as white coat syndrome (being nervous in any doctors surgery was common for me!). He decided to run preeclampsia bloods and urine screening anyway, but these came back within normal ranges. He told me to monitor my blood pressure every day and call if it went above 140/90.

The next few weeks after this appointment, I began to slowly get sicker and sicker. My swelling was excessive and I had pitting edema where my bra straps were and on my chest. I was incredibly exhausted and most nights couldn’t even stand up off the couch and go to bed. I was taking my blood pressure daily and it was staying around the 140/90 range consistently. I had trouble sleeping at night and felt as though when I lay down I couldn’t breathe properly. My muscles felt twitchy and jerky, and I could hardly concentrate. I would drink litres of water during the day to try and flush out my water retention, yet my swelling would only get worse. I noticed that I would hardly needed to go to the bathroom which is definitely not normal for a pregnant woman! 

One morning I woke up and weighed myself, realizing I had gained 5 kg in two days, I was finally concerned enough to call my hospitals maternity unit. I let them know my symptoms and they advised me to rest for 30 minutes, take my blood pressure and call them back. After doing this, my blood pressure machine showed a reading of 170/100 and I burst in to tears. I was petrified and knew something was wrong; I called back and told them I was coming in.

On the hour drive to the hospital, I started to experience the most intense burning pain in between my shoulder blades. It felt like someone was knifing me in the back from the inside. I had to pull over three times on the drive as I couldn’t sit up. Finally I called my mum as my husband was in a meeting and his phone was off. She told me to call an ambulance but I felt ridiculous doing that. I thought maybe I had just put my back out and thought how stupid calling an ambulance for that. Finally I did as I realized I’d been trying to drive to the hospital for two hours and had only made it about 30 km from home.

The ambulance showed up and I remember apologising profusely for wasting their time, but I just couldn’t drive any further. They were incredible and let me know it was the best idea considering I was 23 weeks pregnant.

Once I arrived at the closest hospital, I was ordered to do a urine test. I could hardly produce any urine, and that which I did was the colour of coca cola. When I handed it to the doctor, I saw the look on her face and knew she was concerned for me. After running various tests the nurse explained to me they believed I had preeclampsia. I had heard of preeclampsia before, and from what I had read, you could be monitored for the remainder of your pregnancy and generally, things would be ok. 

All of a sudden I was moved to a birth suite and the midwife was explaining to me they had to transfer me to another hospital as they didn’t deliver babies at my gestation (23w6d). It didn’t click with me what they were getting at, or the seriousness off the situation. I just thought ok, they will just monitor me there or maybe I’ll be on bed rest for a few weeks. They began to administer drugs through an IV which they told me would stop me from having any seizures from the preeclampsia. It wasn’t until I was on the ambulance stretcher, ready to be transferred to the Mater Mothers hospital that I realised maybe things were more serious than the doctors had let on. I saw the looks on the faces of the midwives and doctors in the hall, their faces were riddled with pity but I still couldn’t fully understand why. My husband Michael was with me now, and it had now clicked with him that I was very unwell. He had asked the midwife if he could go home and collect some things for me on his way to the new hospital. She told him that wasn’t a good idea and that he was to follow the ambulance the whole way there.

I didn’t speak a word in the ambulance; I’ll never forget the silence. My accompanying midwife took my blood pressure every 10 minutes and I was too afraid to look at the readings. When we arrived, we went straight to birth suite and there was a room full of people waiting for me. The doctor then explained to me that I had confirmed severe early-onset preeclampsia, but also HELLP syndrome. Both conditions can be life threatening, and mine had progressed to dangerous stages. The pain in my back was from my swollen liver, and my kidneys were barely functioning which explains my decreased urination and extreme swelling. My blood platelets were extremely low and I was at high risk of bleeding. I was told I was lucky to be alive and they were quite shocked I hadn’t had a seizure or a stroke yet. Finally we were told the incredibly heart breaking news they we would be delivering our baby within the next 24 hours. We were then advised of the survival rates of babies born at 24 weeks and left to discuss whether we wanted to resuscitate our baby if she was lucky enough to be born alive.

We were in shock, I was so sick that bed rest and monitoring my symptoms were not an option. Our little girl had to be delivered otherwise I would die. Michael made the heartbreaking phone calls to our families, who immediately made their way to the hospital to be with us. We were then sent for an ultrasound to check the health of our baby. This scan would help us determine our mode of delivery. If she were a good size/ weight her chances of survival of being born at 24 weeks gestation would be higher than if she was growth restricted. After our scan, the doctor broke the news to us that our little girl was extremely growth restricted, weighing an estimated 500grams and being in the 5^th percentile of weight for gestational age. She was measuring more like a 21 week old baby and her chances of survival outside the womb were extremely low.

Given this news, we made the decision to be induced vaginally rather than having a caesarean section which held significant risks due to my platelet levels and general health. We were now aware our baby would most likely not survive a vaginal birth due to her current health and the stress labour would put on her. This was a huge amount of news to process in a mere few hours and looking back, I wonder how we made it through. We still held hope she would survive birth and were channeling so much positivity into what lay ahead. 

The next day I was induced and had a six hour labor. As our baby was delivered our incredibly compassionate doctor informed us her cord had stopped pulsing, and we both just nodded knowing she had gone. Vivienne Rose was born on July 30 2015 weighing a tiny 504grams. She was incredibly beautiful and we were amazed at how she looked despite being so small. The days following are a huge blur as I recovered from my health issues and trying to deal with the fact my child had died. We were moved to the ward and had the most incredible support from the Mater bereavement team. We were able to have Vivienne with us in one of the cuddle cots, and we had photos taken by Heartfelt photographers, an incredible charity capturing the short moments bereaved parents have with their children.

The final time came where we had to leave Vivienne, and leave the hospital empty handed. A moment etched in our memories forever, we left a small teddy bear with her, wrapped her in a warm knitted blanket, gave her a final kiss goodbye and handed her to the amazing counselor who had been looking after us during our stay. We wanted her to go to someone special, and we are lucky enough to still be in contact with the incredible lady who we handed our baby over to–our final goodbye. It’s the small details like this that mean the most and we cannot fault the Mater for the care and sincere compassion they provided.

I'll never forget the moment the lift doors opened and we walked through the lobby which was filled with beaming new parents and ecstatic visitors chatting over coffee and pink and blue balloons. We wandered down the ramp leaving the hospital; bags packed, arms empty, hearts broken. The drive home was quiet and I stared into the horizon with eyes that now saw the world so differently. The emotions were running wild–sadness, shock and despair mixed with feelings of relief that I was even alive. Driving home that day I thought I had faced the worst, but I had no idea of the overwhelming grief that would consume my life in the months to come. In the hospital I was a robot on autopilot, doing what had to be done, putting on a brave face for my friends and family. Coming home and trying to get back to a normal life proved harder than I ever imagined. Our ‘new normal’ as us bereaved parents call it is not something one would wish upon any parents.

How do you even start this ‘new’ life? A life in which you have lost all hope in the universe and its ‘plan’. A life in which it feels as though everyone has it all and you have absolutely nothing. A life where just the smallest inconvenience feels like the world is on your shoulders. A life where it feels like everyone else is pregnant except you. A life in where you feel as though you have failed, not only yourself and your baby, but your family and friends. The months to follow Vivienne’s death were excruciating and I still wonder how I even survived.

A turning point for me was attending a weekend for bereaved parents organized by the bereavement team at the hospital. This was the first time we met other parents with children who had died. When we arrived we all sat in a circle and shared our stories and our children. After hearing these heartbreaking stories, I finally felt as though I fitted in somewhere again. I wasn’t walking this dreaded path alone. Our stories were all so different but we all had one thing in common, we were walking around with a part of our hearts missing. I went home from that weekend still completely devastated, but I now had a small amount of hope that I would survive this, and maybe one day even be happy.

With mixed recommendations from doctors about what may happen to me in subsequent pregnancies, it was a tough decision on how and when we would try to expand our family. We were advised we had a high chance of this happening again especially as the preeclampsia had been so severe and come on so early. Eventually the desire to hold another child in our arms took over and it’s all we could think about. 

Six months after Vivienne’s death we found out we were pregnant again. Under the incredible care of our obstetrician Dr David Moore, we were monitored extremely closely and delivered a healthy baby girl 9 months later with no signs of preeclampsia or HELLP syndrome. The pregnancy was long and tough and every small pregnancy symptom weighed on my mind, constantly wondering whether I was getting sick again. When Eva was born, I was so grateful she had arrived safely and immediately felt an immense healing feeling. Without Vivienne we never would have been blessed with Eva, and I will forever be thankful of the sacrifice our first daughter made for our family and us.

Another year down the track from Eva’s birth, we discovered that we were again pregnant. This time however, we got the shock of our lives when we found out we were having twin girls. One day before Vivienne’s 3^rd anniversary we welcomed two more beautiful children, Summer and Elle.

Having to make the decision to induce labour and essentially end our baby’s life to save my own is one that is incredibly cruel. I would be lying if I said the decision we made didn’t weigh on our minds even now three years later. I truly believed in the months following Vivienne’s death that I would never be happy again. I’m so glad to admit that I was so very wrong. I have learnt to live my life in honor of hers and I refuse to let her death get the best of me.

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